# Can someone help me out?



## Jo853 (Aug 16, 2013)

I don't know where to begin.

Right.

Here are results from 6 blood tests I have had done within the past year.

January 2013

TSH - 0.69 (0.27-4.2)
Anti-TPO antibodies - 84,000 (<34)

May 2013

TSH - 22 (0.27-4.2)
FT4 - 10.9 (12-22) - Started on Levo at 25mcg, 50 and then 75

August 2013

TSH - 4 (0.27-4.2) - Levo increased to 125mcg

November 2013

TSH - 4.3 (0.27-4.2)
FT4 - 15.3 (12-22) - Levo increased to 150mcg

December 2013

TSH - 4.6 (0.27-4.2)
FT4 - 15.6 (12-22)
Anti-TPO antibodies - 41,000 (<34)

January 2014

TSH - 2.7 (0.27-4.2)

Doctor has said I have an autoimmune thyroid illness but Endo said at the appointment that I have Hashimoto's. However the Endo has now put in the report that I have "primary hypothyroidism."

She has also suggested that these symptoms:

* Constipation after eating flour/wheat/gluten
* Inability to gain weight
* Cold intolerance
* Joint/muscle pain
* Fatigue
* Excessive daytime sleepiness
* Headaches
* Nausea
* Dry, flaky skin
* Migraines
* Cramps
* Muscle weakness
* Heavy/early/late/short periods
* Short menstrual cycles
* Puffy eyes
* Thin/fine hair

are caused by Vitamin D deficiency (result for Vitamin D is 43.6 with normal >75).

Is she right to think that and why has she changed her stance on what type of hypothyroidism I have? She told me at the appointment I have Hashimoto's!

Thanks

Jo xxx


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## Justaguy (Jan 31, 2014)

Your doctor didn't change the diagnosis - Hashimoto's is a form of primary hypothyroidism. Primary hypothyroidism is a general category of hypothyroidism - it means that the hypothyroidism is caused by a deficiency in your thyroid itself. In secondary hypothyroidism the cause is a problem with your petuatary gland, and in tertiary hypothyroidism the cause is your hypothalamus.

http://www.healthline.com/health/hypothyroidism-primary


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## Airmid (Apr 24, 2013)

I wish they would just settle on one word. Hashimoto's Thyroditis is a form of autoimmune thyroditis and is primary hypothyroidism - meaning it's not caused by some other underlying condition. So they all basically mean the same thing - Hashimoto's is just the actual specific name for what they think you have.

Vitamin D testing is just out of control It's gotten easier to measure and now it's being blamed for actually causing things, instead of it being a seconday factor.

Plus your Vitamin D is fine. You don't need to have sky high vitamin D, in fact they're finding that taking supplements may not do anything or worse cause harm depending on what is actually wrong. You are well within normal ranges for it. I don't know where she's getting .>75 as over 30 is considered normal on most labs I've seen.

So they put you on thyroid hormone and you are bouncing all over the place. Welcome to my world. Then she blames your issues on vitamin D when there's no real research suggesting any of this and pretty much of all those symptoms are directly connected to thyroid disorders. Why in the world would she think that if you are having issues with your thyroid? I'd get a new doctor personally, one that doesn't think a normal range vitamin D is low. If anything she should be happy you're well within normal with Hashi's vitamin D can be a problem.

Ideally, when on thyroid hormone you should not be bouncing around and instead going steadily down to suppression which is the goal. When my Hashi's was first found I went from a TSH of 1.1 to 17 in a couple of months. I bounced all around, with and without hormones (depending on the competency of my doctor) and have swung in and out of normal.

It's good that your last TSH went back down to 2.7 but the others concern me as they increased the dosage and you went up. Have they never tested for T3 at all during this as it may be a contributing factor? Have they ever done an ultrasound at all to see what's going on in there? I do dislike the fact that some doctors claim you don't need an ultrasound if they can't feel a nodule.

I would ask for an ultrasound, especially with those high antibodies and see what's happening. You do have the symptoms of hypo with a few hyper ones thrown in. Personally I can sit in both and have an intolerance to heat, insomnia, and some other hyper issues along with the hypo issues such as having really dry skin (sometimes I wake up and find all this dry skin in bed, eww so embarrassing) ridged nails, fatigue etc.

But seriously, I would look for a different doctor. You obviously have thyroid issues with normal vitamin D, I wouldn't trust any doctor telling me my obvious thyroid issues are caused by a non-existent vitamin deficiency but that's just me.


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## Jo853 (Aug 16, 2013)

Airmid said:


> I wish they would just settle on one word. Hashimoto's Thyroditis is a form of autoimmune thyroditis and is primary hypothyroidism - meaning it's not caused by some other underlying condition. So they all basically mean the same thing - Hashimoto's is just the actual specific name for what they think you have.
> 
> Vitamin D testing is just out of control It's gotten easier to measure and now it's being blamed for actually causing things, instead of it being a seconday factor.
> 
> ...


Hi thanks for your comment.

None of my usual doctors tested for T3 so I went down the expensive route of getting it privately done. I've only had it done once and this was the result.

FT3 - 5.5 (3.1-6.8)

Ultrasound was done, 2 years ago, and this is what it says:

"Mildly enlarged thyroid but no intrinsic abnormality of concern. Mildly vascular but significance of this uncertain."

This report was lost and never shown to my doctors.

Endo has refused to do ultrasound as an MRI was normal - but she said this before I personally went to the hospital where I had this ultrasound done and asked for a copy of the report. I am hoping she will go ahead with it now.

Thanks

Jo xxx


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## Airmid (Apr 24, 2013)

Two years is along time for some conditions. Things can definitely change in that course. Was that the only comment on the ultrasound report you have?

I like how they said "no intrinsic abnormality of concern" like they saw something in there but brushed it off. It probably is nothing but rather interesting wording.

Just the fact that it was mildly vascular should warrant another one. They were unsure two years ago really what that meant and may very well be able to see better if there is significance or not.

When did you have the MRI done? They are not the end all be all for imaging. Some things show up really well and can be studied, other problems may not show up at all and need completely different imaging. I am actually unsure of how sensitive an MRI is for thyroids but I would almost guarantee that it shouldn't rule out getting an ultrasound done. Ultrasounds are not expensive tests (well unless you're at a place that jacks up the rates for insurance purposes) and can give a good picture of what your thyroid is doing. Plus seeing as it was enlarged two years ago and most likely hasn't shrunk looking at your labs (and has probably swelled more) then the MRI really didn't provide a complete picture and I would point that out to her too.

The only thing I can think to ask with that vitamin D range is if you are in Europe. They use a different measuring system and I do remember the lower end of normal being I believe 75 with them. It not, then you are more then fine on it. Even if you are somewhere where they use a different measuring system vitamin D doesn't always have to be normal. They're finding that there's a lot of healthy people wandering around with lower levels of vitamin D for various reasons, including the time of the year. Even my own Endo who is a bit obsessed with vitamin D would just like to see me in the twenties. There have also been recent reports that vitamin D supplementation doesn't really benefit you (outside of certain cases like vitamin D enriched calcium tablets) and a lot of claims about it, like being a cancer preventative are being found false.

Other times people have low vitamin D for a reason. Some autoimmune diseases lower vitamin D in various ways. In Hashi's there is thought that it has to do with the effects on metabolism making it difficult for the body to absorb and use it. Other autoimmune disease lower vitamin D as a protective thing. Even so, obviously there is a primary condition here - the autoimmune disorder and the vitamin D issues (if they are really issues) are secondary. Meaning that addressing the autoimmune disease will help fix the secondary problems naturally.

Which is why I do think you need another doctor. It's usually not worth sticking with one that wont address the primary issues and hoping they'll change or you can educate them unless you have no choice in the matter. If she wants to claim thyroid disorder symptoms are instead caused by vitamin D ask her where she got this information. It's certainly not mainstream science, which would say your thyroid is off.

I do find it interesting they keep looking at the antibodies but not seeing if you are having problems with your T3.


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## CA-Lynn (Apr 29, 2010)

Airmid stated that Vitamin D testing is out of control. I couldn't agree more. It IS being blamed for everything and I'm convinced that it's just a bandwagon that everyone is jumping on.

Kind of silly to keep running antibodies. Once you have them, you have them. They wax and wane.


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## Andros (Aug 26, 2009)

A resounding yes to all you have advised!

And it is true. Hashimoto's and Thyroiditis are used interchangeably and mean the same thing. Good Grief! Could it get any more confusing?

Hugs and thanx!


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## Andros (Aug 26, 2009)

Histologic diagnosis of Hashimoto's
http://emedicine.medscape.com/article/120937-diagnosis
(Copy and paste into your browser)

Hashimoto's Hurthle cells
http://www.pathconsultddx.com/pathCon/diagnosis?pii=S1559-8675(06)71549-2
(Copy and paste into your browser)

http://www.thyroidmanager.org/chapter/hashimotos-thyroiditis/
(Copy and paste into your browser)

http://www.mayoclinic.com/health/hurthle-cell-cancer/DS00660
(Copy and paste into your browser)

Only a biopsy can determine Hashimoto's. Anything else would be a guess. And vascular does suggest an independent source of a blood supply. You do need a current ultra-sound.

Sending hugs,


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## Jo853 (Aug 16, 2013)

Airmid said:


> Two years is along time for some conditions. Things can definitely change in that course. Was that the only comment on the ultrasound report you have?
> 
> I like how they said "no intrinsic abnormality of concern" like they saw something in there but brushed it off. It probably is nothing but rather interesting wording.
> 
> ...


Hi, thanks for your reply.

There is another comment on the ultrasound report that says:

"In conclusion no significant abnormality in which to give a cause for patient's symptoms or need for biopsy."

Endo has stated she will not do a repeat ultrasound as the report states no nodules and it was mildly enlarged at the time and not now.

MRI was done around about the same time - 2012 in February. Only finding on that was enlarged tonsils, nothing more. But they said it was normal.

The front of my neck did swell at the time but has now shrunk. So what's with the high antibodies?

I don't think my Endo or doctor will look at T3 and I've only had it tested once - privately.

Jo xxx


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## Jo853 (Aug 16, 2013)

Andros said:


> Histologic diagnosis of Hashimoto's
> http://emedicine.medscape.com/article/120937-diagnosis
> (Copy and paste into your browser)
> 
> ...


Thanks for your reply.

Endo will not do another ultrasound or do a biopsy.

Jo xxx


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## Airmid (Apr 24, 2013)

Do you have a GP? If so go to them and say "I want a different Endo now!" Get a referral to someone you are covered by and see what they have to say.

A lot can change in 2 years. I'd struggle not to smack that Endo over the head if she was mine and say exactly that. You are still having issues, I saw your other thread. This is ridiculous. You need to feel better not have random things blamed.



CA-Lynn said:


> Airmid stated that Vitamin D testing is out of control. I couldn't agree more. It IS being blamed for everything and I'm convinced that it's just a bandwagon that everyone is jumping on.
> 
> Kind of silly to keep running antibodies. Once you have them, you have them. They wax and wane.


It is really frustrating at times as you watch people, including yourself, get diagnosed with a bunch of little things instead of someone looking at the big picture.

The world expert on parathyroid function has stated that he wishes Endo's wouldn't test for vitamin D unless there was a real reason to - i.e. investigating bone loss - as they don't know how to interpret the results. It only ends up hurting patients in the long run with misc. diagnosis, can do real harm to patients with certain disorders by giving them high amounts of vitamin D and just doesn't solve anything by not looking at the real problem.


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## Jo853 (Aug 16, 2013)

Airmid said:


> Do you have a GP? If so go to them and say "I want a different Endo now!" Get a referral to someone you are covered by and see what they have to say.
> 
> A lot can change in 2 years. I'd struggle not to smack that Endo over the head if she was mine and say exactly that. You are still having issues, I saw your other thread. This is ridiculous. You need to feel better not have random things blamed.
> 
> ...


Thanks for your reply.

Yes, I have a GP but she is hard to get appointments for - I take it because she is the most popular one.

I have an ultrasound booked for the 19th March.

I did feel well on the Vitamin D but I have now started to feel unwell again. Not sure why.

Jo xxx


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## CA-Lynn (Apr 29, 2010)

If getting an appointment with your doctor is difficult, what you need to do is:

1. Get on a cancellation list.

2. Call every morning about 30 minutes after the office opens and find out if they can get you in.

Sooner or later they get tired of your phone calls and typically will get you in if there was a cancelation that morning.....even if you're not next on the list.


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## Airmid (Apr 24, 2013)

I'm glad you finally got another ultrasound. At least it's not far away.

The vitamin D issue really doesn't surprise me. Some of it may have been the placebo effect or perhaps just that you would have felt a bit bitter anyways.

As Lynn says, be a thorn in their sides. Just call every morning and ask for an appointment and if a time has opened up. Either they'll get sick of you calling or you'll get an office member that has mercy on you and gives you one.

I can't do this with the VA as we can't contact anyone directly usually. So when I really need something resolved I go down, fill out the walk in sheet and sit there quietly and stare at them. Amazing how quietly staring without a complaint can unnerve people enough to get things moving. I wish I could go stare at the director to get my referral to outside care moving...


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## Jo853 (Aug 16, 2013)

Airmid said:


> I'm glad you finally got another ultrasound. At least it's not far away.
> 
> The vitamin D issue really doesn't surprise me. Some of it may have been the placebo effect or perhaps just that you would have felt a bit bitter anyways.
> 
> ...


Thanks for your reply.

I have felt worse since posting and I think it could be down to the Levo. So I will be posting another question on this if that's ok.

Jo xxx


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## Andros (Aug 26, 2009)

Wow! You need to start screaming the "C" word! Is this your insurance that is controlling your medical care?

Hugs,


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## Jo853 (Aug 16, 2013)

Andros said:


> Wow! You need to start screaming the "C" word! Is this your insurance that is controlling your medical care?
> 
> Hugs,


Hi Andros, thanks for your reply.

No, I am on the NHS.

Jo xxx


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