# Newly diagnosed with Hashi's - Feel worse since taking Levothyroxine.



## fuzzface100

Hi all,

I'm newly registered (just posted my intro on the 'newbies' section). It's a long post so, just to summarise...

I'm male, aged 36 from the UK, just diagnosed with Hashimoto's and Hypothyroidism. I was started on 25mcg of Levothyroxine and now up to 50mcg but to be honest I actually feel worse and my symptoms are worse than when I started taking it.

I just wondered if anyone else has had this experience? I've read things to suggest that with Hashi's, if you're put on too lower a dose, it can actually aggravate symptoms as the dose 'activates' your thyroid but isn't strong enough to cancel out the auto-immune attacks going on.

So there's a kind of 'battle' going on in your body where your immune system senses that your thyroid's trying to work normally and fights to shut it down again.

Is this normal?! I'd be glad to hear of anyone else's experiences.


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## desrtbloom

Hi!

I'm so sorry you are feeling so poorly. It could be that Levothyroxine isn't your drug. You might need to try Synthroid. If you have slowly started feel worse after the ingestion of the Levothyroxine, then you might just be having a reaction to the Levothyroxine versus the Hashi's getting worse. I can't take Levothyroxine as I have a terrible reaction.

Have you had a blood draw lately to see what your levels are? If so, can you post the levels and the ranges?

What part of the UK?

Patti


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## HeidiBR

Yes, the same thing happened to me. I was on the same dose as you, and felt worse until I had the dose increased. It is like the thyroid gets lazy and decides not to produce when it gets supplementation in the form of T4 medication.

Levothyroxine is the generic form of Synthroid. Maybe as Desert suggests you might do better on the name brand. Bu it is the same active ingredient; Synthroid is not a different drug.


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## Andros

fuzzface100 said:


> Hi all,
> 
> I'm newly registered (just posted my intro on the 'newbies' section). It's a long post so, just to summarise...
> 
> I'm male, aged 36 from the UK, just diagnosed with Hashimoto's and Hypothyroidism. I was started on 25mcg of Levothyroxine and now up to 50mcg but to be honest I actually feel worse and my symptoms are worse than when I started taking it.
> 
> I just wondered if anyone else has had this experience? I've read things to suggest that with Hashi's, if you're put on too lower a dose, it can actually aggravate symptoms as the dose 'activates' your thyroid but isn't strong enough to cancel out the auto-immune attacks going on.
> 
> So there's a kind of 'battle' going on in your body where your immune system senses that your thyroid's trying to work normally and fights to shut it down again.
> 
> Is this normal?! I'd be glad to hear of anyone else's experiences.


Welcome to the board!










Alas; this is normal. The titration process takes you everywhere you don't want to go until you finally feel better! I hope your doc has you getting labs every 8 weeks and continues to initiate the titration process until you are euthyroid (normal feeling) and you will only have to maintain; usually getting labs on a quarterly basis.

In the meantime, do good things for yourself. Diet improvements, sufficient rest and water, moderate walking exercise.

You will get there!

Did your doc run antibodies' tests?

Do you have any lab results you would like to share including the ranges?


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## fuzzface100

Hi all and thanks for the replies. I'm from Manchester in the UK by the way desertbloom.

It's reassuring to hear that other people have had the same experience.

I was only officially diagnosed around two months ago and I've only been taking Levothyroxine for six weeks so far, so I accept it's early days for me at the moment.

I realise it's the norm to build up the levels slowly, but to be honest, I'm a fairly big bloke (6 feet 2 and around 16 stone) so I'm sure I could have tolerated a higher starting dose. Even my Sister who's much smaller than me was started on 75mcg.

I've only had one set of blood tests done so far (due to have another done in a week or so) but here's what I have so far.

TSH = 6.51 (range 0.8 - 5.0)
FT4 = 13 (range 11 - 24)
TPOab = 56 (range 0 - 10)

There was another test done at the same time apparently for Coeliac disease and I was just told that this came back negative.

My FT4 result is actually just in range but I've read that with Hashi's, this can fluctuate day by day quite a lot, so I guess it depends what state your bloods in when the sample's taken. Looking at some of the other results on the boards, mine don't seem too extreme but I suppose it's all down to how you feel.

One thing i'm worried about is that when I have my next blood test done, my TSH might be back inside the so-called 'normal' range and my Doctor (who i'm not confident understands Hashi's) will refuse a dose increase.

I guess I'll just have to wait and see anyway....


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## northernlite

I am with you that you could have been started at a higher dose. I am 5' 4" and fairly normal weight for my height (not sure how many stones!) and I started at 50 mcg and am now at 75 mcg. My TSH was 6 something and 8.4 when taken a couple days apart.

Fortunately I never had the "get worse" feeling. The 50 was enough to show me I was headed in the right direction. I only saw improvement.

Interestingly, I am also Hashi's and my FT4 has always been in the normal range, even at diagnosis before I started medication. It also hasn't changed much even though my TSH is way down and almost all my symptoms are gone.


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## fuzzface100

Thanks for the reply northernlite,

Those results are from before I started on the meds so it'll be interesting to see what's changed since I've started taking Levothyroxine.

Another thing i've read is that for people with Hashi's, they tend to feel much better when their TSH is closer to the lower end of the lab ranges (around 1 in my case) and FT4 towards the higher end of the scale.

Just wondered if anyone has any experience of this?

Many thanks for all your replies anyway - this forum is a massive help!


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## desrtbloom

It usually takes about eight weeks for the med to fully get into your system, so hopefully in a few more weeks you will start to feel better. If not, then you probably need a dosage adjustment. I have had to have a few adjustments, so it just might be a matter of getting the appropriate amount.

As for the Synthroid, like I said I had a horrible reaction to the Levothyroxine that landed me in the hospital, so my system didn't handle whatever was in it (which the fillers, etc. are different to Synthroid and vary per manufacturer). I am not saying that is what is going on with you, just merely sharing that if your symptoms continue to get worse after you have been on it for awhile you might try the Synthroid brand or one of the other generics.

Good news you don't have Celiac's Disease. 

My husband is from Oxford.

Good luck!

Patti


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## northernlite

I started at a high of 8.4 and only felt about 80% better when my TSH fell to just over 2. With another increase in Levo my TSH fell to 0.82 and I felt fantastic! So I am one that will say, get your TSH down to 1 or a little below when searching for your optimal dose.

Then my pharmacy changed my Levothyroxine manufacturer and within 7 days my symptoms began to return. After 4 weeks I went back to the doctor and my TSH had risen to just over 2.0 again at the same dose just a different manufacturer and I felt lousy again. So we increased with the new brand of Levo again and am on the hunt for that under 1.0 TSH number again and I think I am getting there!

Even as I change doses and my TSH moves all over the place my Ft4 stays about the same and at a fairly decent number. My doctor finally ran a FT3 on my last visit when I was feeling so lousy and it was at the bottom of the range. So try to get that TSH down to 1 or below and see if you can talk them into running a FT3 too and get that and FT4 at least above the midrange. Every person is different but a lot of people find their optimal dosage of medication when their numbers meet those criteria.

Takes patience and persistence but don't stop until you say, "yes I feel great!".


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## bigfoot

I suspect having a TSH of 6.51 is part of what's making you feel lousy. Not to mention your Free T4 being low, along with the positive test for TPO antibodies (Hashi's). And I wonder what your Free T3 is?

When I had a TSH of 6.94 last year, I can honestly say that was the worst I had ever felt. Made a year of chemo look like a cakewalk. As my TSH has risen and dropped, along with the other numbers, I can look back at my labs and spot where I was feeling "good".

Hang in there and things will get better! Don't be afraid to ask for a different brand of medication or an increase if you think it might help. But the folks here are right -- it takes around 4 weeks for the medication to start to peak in your system. You may notice changes sooner or later than that, too.


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## fuzzface100

Hi folks,

Thanks again for all your responses.

This backs up what i've been reading about Hashi's and speaking to my Aunty on the phone tonight (who's lived with Hashi's for over 30 years) she said that she feels best when her TSH is right at the bottom end of the range (around 1). So this is what I am going to push for.

To be honest, it's a real struggle here in the UK to get Doctors to do more thorough tests for thyroid and related conditions (I still haven't had my FT3 tested). Probably due to cost I suspect and again, lack of understanding on the part of the Doctor.

I've actually had a look at the website that a lot of UK GPs refer to for information on medical conditions:
http://www.cks.nhs.uk

The GP advice on there for hypothyroidism is quite concerning if they do follow it rigidly. A TSH level of up to 10 is considered 'subclinical hypothyroidism' and is not routinely treated. There's very scant info about auto-immune thyroiditis and how it affects lab results. There doesn't seem to be any suggestion of testing for FT3.

My backup plan anyway, if I still don't get anywhere with NHS Doctors, is to go and see a private endocrinologist. There's one particular specialist here based in Birmingham who seems to get great reports from patients who he's helped and he seems to have the right attitude of treating symptoms taking priority over lab results.

Hopefully, I won't have to do that but I'll see how I get on at my appointment next week anyway.


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## fuzzface100

Just had my latest appointment with my Doctor and i'm really, really pleased with how it went. She is definitely the best Doctor i've seen about this by a mile.

It turns out she has quite a bit of experience of treating Hypothyroidism and has helped patients with Hashi's too which is re-assuring.

She's referred me to an endocrinologist anyway and had no problems about upping my doseage to 75mcg straight away without waiting for another blood test, though I'm booked in for another set of tests next week to check my levels.

Also, she agreed with me about getting my TSH down to the very bottom of the range due to having Hashi's which i'm so relieved about. I was anxious that I might hit a brick wall with that suggestion but she told me about another patient she's seen who's she's trying to do the same for.

So, all in all, i'm feeling much happier and re-assured. I don't want to go over the top but she's an absolute breath of fresh air. Finally, after playing the 'Doctor lottery' for so many years, I seem to have found one who's prepared to treat me properly. Why can't all Doctors be like this?!!!

I'm still feeling crap symptoms-wise but this appointment today has made me feel a lot more positive about things.


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## Andros

fuzzface100 said:


> Just had my latest appointment with my Doctor and i'm really, really pleased with how it went. She is definitely the best Doctor i've seen about this by a mile.
> 
> It turns out she has quite a bit of experience of treating Hypothyroidism and has helped patients with Hashi's too which is re-assuring.
> 
> She's referred me to an endocrinologist anyway and had no problems about upping my doseage to 75mcg straight away without waiting for another blood test, though I'm booked in for another set of tests next week to check my levels.
> 
> Also, she agreed with me about getting my TSH down to the very bottom of the range due to having Hashi's which i'm so relieved about. I was anxious that I might hit a brick wall with that suggestion but she told me about another patient she's seen who's she's trying to do the same for.
> 
> So, all in all, i'm feeling much happier and re-assured. I don't want to go over the top but she's an absolute breath of fresh air. Finally, after playing the 'Doctor lottery' for so many years, I seem to have found one who's prepared to treat me properly. Why can't all Doctors be like this?!!!
> 
> I'm still feeling crap symptoms-wise but this appointment today has made me feel a lot more positive about things.


If this is the case; can you not stick w/her instead of seeing an endo which may or may not mess you up?

I am so happy and I hope the little extra bump up in your med kicks in soon.


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## fuzzface100

I think I'm going to go with the referral to the endo for now to see how well up they are at managing Hashi's and Hypothyroidism. Knowing the NHS it will take months before I get an appointment anyway.

If they don't give me the help I need then I can always go back to my Doctor. Feel so lucky to have found a decent Doc at last - I just hope she doesn't retire or stop practising!


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## bigfoot

Glad you found a good doc! That is half of the battle right there. Like you said, it can't hurt to see the endocrinologist.
:anim_32:


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## Sanapia

I encourage you to consider Synthroid rather than a generic. I was fortunate enough to work with one of the leading Endocrinologist's in my region (co worker). She is bent on using Synthroid because many of her patients have had inefficient experiences with generic.


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## fuzzface100

Ok, latest update...

I had some more blood taken last week and just had a telephone appointment with my Doc.

The latest results I have are:

TSH - 4.95 (0.35 - 5.5)
FT4 - 18 (10 - 24)

So my TSH has come down (from 6.5) and now in the so-called 'normal' range . My FT4 has gone up too (from 13). The previous results were from my initial diagnosis before I started medication.

I'm a bit disappointed they haven't tested my FT3 as I would have thought it's quite important to see how well your body is converting the T4 but I've read that it isn't part of the routine thyroid tests here in the UK which is probably down to NHS cost savings.

On the plus side, i'm super glad i've found this Doctor. She's very re-assuring and helpful. She has the knowledge and experience to know that my TSH needs to come right down to the bottom of the scale and knows that I probably won't start feeling better until it's come right down. I had worries that as soon as I was in the normal range, I'd be pronounced 'cured' so it's quite a relief that I'm not going to have to battle the case for that. Also she's very open to trying other treatments e.g. natural thyroid (Armour) if I don't have good results with synthetic thyroid.

She's put me up another notch to 100mcg of Levothyroxine for now and I've just had an appointment through to see an endocrinologist in September. I'm hoping they might run some more thorough tests (including FT3) to see what's going on and I have lots of questions to ask them.

Still, it's nice to know I've finally found a good GP to fall back on if I don't get anywhere with the endo...


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## Andros

fuzzface100 said:


> Ok, latest update...
> 
> I had some more blood taken last week and just had a telephone appointment with my Doc.
> 
> The latest results I have are:
> 
> TSH - 4.95 (0.35 - 5.5)
> FT4 - 18 (10 - 24)
> 
> So my TSH has come down (from 6.5) and now in the so-called 'normal' range . My FT4 has gone up too (from 13). The previous results were from my initial diagnosis before I started medication.
> 
> I'm a bit disappointed they haven't tested my FT3 as I would have thought it's quite important to see how well your body is converting the T4 but I've read that it isn't part of the routine thyroid tests here in the UK which is probably down to NHS cost savings.
> 
> On the plus side, i'm super glad i've found this Doctor. She's very re-assuring and helpful. She has the knowledge and experience to know that my TSH needs to come right down to the bottom of the scale and knows that I probably won't start feeling better until it's come right down. I had worries that as soon as I was in the normal range, I'd be pronounced 'cured' so it's quite a relief that I'm not going to have to battle the case for that. Also she's very open to trying other treatments e.g. natural thyroid (Armour) if I don't have good results with synthetic thyroid.
> 
> She's put me up another notch to 100mcg of Levothyroxine for now and I've just had an appointment through to see an endocrinologist in September. I'm hoping they might run some more thorough tests (including FT3) to see what's going on and I have lots of questions to ask them.
> 
> Still, it's nice to know I've finally found a good GP to fall back on if I don't get anywhere with the endo...


This most certainly is an excellent report. I am thrilled for you and you sure did find a good doctor.

Keep up the good work and "keep" that doctor!


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## fuzzface100

Thanks Andros,

Despite the horrible symptoms i'm having, I feel more positive than I have done for a long, long time because I'm finally getting the help I need after over a decade of thyroid hell. It makes such a difference and gives me hope that eventually I'll get to feeling like the 'real me' again someday.

It may sound over the top but I honestly feel like I've won the lottery finding this Doctor after such bad experiences in the past! I'm even considering writing her a 'thankyou' letter! I guess she might find that a bit strange though!

Just wish she could treat so many of the other people suffering on these boards.


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## Andros

fuzzface100 said:


> Thanks Andros,
> 
> Despite the horrible symptoms i'm having, I feel more positive than I have done for a long, long time because I'm finally getting the help I need after over a decade of thyroid hell. It makes such a difference and gives me hope that eventually I'll get to feeling like the 'real me' again someday.
> 
> It may sound over the top but I honestly feel like I've won the lottery finding this Doctor after such bad experiences in the past! I'm even considering writing her a 'thankyou' letter! I guess she might find that a bit strange though!
> 
> Just wish she could treat so many of the other people suffering on these boards.


I write and send e-mails thanking my doctor all the time. I do not think your doctor would mind that a bit. You just might make her day!

A card would be nice; just a brief note how much you appreciate her. Hey................a random act of kindness; ya' know?

Go for it!


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