update on subacute thyroiditis: Just posting an... - Thyroid UK

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update on subacute thyroiditis

Morey53 profile image
9 Replies

Just posting an update on my experience with subacute thyroiditis. Thanks for the support in this forum! Since mid August I was quite unwell with classic symptoms of thyroiditis (significant neck pain, high inflammatory markers) and became quite thyrotoxic. I was eventually given a course of steroids as my ESR was stubbornly high (40mg prednisone) which was tapered off and B blockers to manage thyrotoxic symptoms. The steroids worked like magic and I’m now feeling so much better. I also started B complex vitamins and iron supplements.

I saw the consultant this week and my bloods show I may be tipping into hypothyroidism and I need to see if I get any symptoms and may need some supplementation with levothyroxine if my TSH rises. I have added a summary of my bloods for info!

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9 Replies
greygoose profile image
greygoose

With an FT4 of 8.5 (12-22) and an FT3 of 3.4 (3.1-6.8) I would say you need levo now, and never mind the TSH! You are very hypo with those results. I don't know how you manage to get out of bed.

Morey53 profile image
Morey53 in reply togreygoose

I actually don’t feel too bad - that’s probably in comparison to how awful I felt when thyrotoxic! The consultant did say to contact them sooner if I was getting significant symptoms and he would start Levo. Thanks for the reply amd advice on my bloods

greygoose profile image
greygoose in reply toMorey53

You're welcome. But, don't wait for the TSH to catch up with the low levels of thyroid hormones. It can be very slow.

humanbean profile image
humanbean

Some of your results are indicative of anaemia. I can see that several of your results have been fluctuating wildly, so whether my comments are still true I don't know. You would need to be retested.

It would be a good idea to ask your doctor to arrange an iron panel for you, and for you to get folate and vitamin B12 tested.

The measure that most doctors use to diagnose anaemia is haemoglobin (Hb). The NHS often uses a lower level of 115, but the World Health Organisation uses a minimum level of 120 for non-pregnant women, and since I am convinced the NHS uses reference range manipulation to determine who gets treated for all sorts of things to save money (I'm a cynic), I would prefer the WHO definition in this case.

If you go to this page :

who.int/publications/i/item...

then click on Download (under the picture) then go to page 3 of the document that comes up you'll see the levels of Hb the WHO uses for diagnosing anaemia in different people.

Also, your serum iron is below range, and optimal levels with the range you've given would be around 23 or 24. So you can see your level of 4 is dire.

Folate and Vitamin B12 being too low can also cause anaemia, and your folate is dreadful as well. Optimal for folate is in the upper half of the range and with the range you've given this would mean optimal is roughly 15 - 26.8.

If you can't get your doctor to help with these tests they can be done privately with finger-prick testing, no doctor required.

Once you have some results you can post them in a new thread and ask for feedback. We can also make suggestions on how these things can be improved (if they still need improving).

For the NICE guideline on iron deficiency anaemia, and B12 and folate deficiency anaemia see these links :

cks.nice.org.uk/topics/anae...

cks.nice.org.uk/topics/anae...

Note that the medical profession usually thinks that any test result in range is fine or even optimal. Patients on this forum would disagree - bottom of the range isn't a good place to be for many things.

pennyannie profile image
pennyannie

Hey there again :

Do you know how to find your previous post and all your replies - if not - just press the icon top right saying Profile :

Your T3 and T4 levels are now very low and your has TSH moved back into the range so, hopefully the ' horrible ' symptoms have eased and you feel more comfortable -

BUT if your T3 and T4 do not pick up and start building up in the ranges you will start to be suffering the equally disabling symptoms of hypothyroidism.

Imagine a seesaw - you were high off the ground with high T3 and T4 levels and very unwell -

You now look to be stuck down in the mud and with no momentum with too low a level of T3 and T4.:

Please get your vitamins and minerals rerun as these tend to nose dive and non optimal levels of ferritin, folate, B12 and vitamin D can, unnececessarily, compromise your healh issues further.

Do you hae a range there for the TSH receptor antibody reading - I'm taking it as a negative?

Morey53 profile image
Morey53 in reply topennyannie

Many thanks for your reply- I don’t have a range for the TSH receptor Ab unfortunately. I understand what you mean about the see saw- that is what worries me that I am likely to experience hypo symptoms so I am keeping a close watch for those and the probable need for levothyroxine. The endocrinologist does feel it is still most likely to have been a subacute thyroiditis, the concern was that the hyper phase was more prolonged than the normal pattern and I do feel I am being kept a close eye on with a review in 4 weeks with bloods (or sooner if needed).

I will redo my vitamins privately in the next few weeks- I have been really trying to optimise my nutrition and get my haemaglobin and iron up and taking D3 sublingual and B complex. My Hb was nose diving but I believe that can happen in subacute thyroiditis and it is getting better. I would t have known anything about the role of vitamins etc except for this forum.

I imagine there is a lag between T3 and T4 dropping and TSH rising?

Many thanks.

pennyannie profile image
pennyannie in reply toMorey53

There is an overall lag with blood tests results running behind symptoms by a few weeks -

and generally the TSH the slowest to rspond so it's best to monitor and dose of Free T3 and Free T4 readings:

I 'm glad you have now have had support from Humanbean on the anemia side of things - as I backed off this subject last time as it's complex:

I don't think you're looking at Graves- as different medication would have been prescribed and your T3 and T4 would not have dropped off as fast as what they have. but at least the blood test was run - to rule out this auto immune disease.

When taking D3 we need to also take MK7 - K2 - to direct said to teeth and bones and not arteries and heart muscle.

Start a new post with any new information, blood test results, etc, and you will be talked through what it all means and advised on your next best steps back to where you were before this health issue.

If taking any supplements leave these off for around a week before you take the blood draw so we can see what your body is holding rather than what you have just ingested.

I trust your new job has been held over for you and your recovery continues.

Julietilly22 profile image
Julietilly22 in reply toMorey53

I had exactly the same last year. I've never been so ill! It took quite a while for them to diagnose me despite being advised to go straight to A & E at one point as my BP was so high as my palpitations were through the roof. I was in the hyper phase from Oct to Dec and just when I finally got to see the consultant, the pain spontaneously stopped, so I never got to take the steroids and instead lived on Ibuprofen for months. By March I was showing signs of Hypo , tsh 7.3 T4 9 and was put on Levothyroxaine. My levels are still not back to normal. This is partly due to slow reviews. I'm still under the hospital and the consultant told me that if my tsh was going to go back to normal it would have by now. I was positive for TP0 antibodies however, although I have read on some studies that they rise transiently with viral thyroiditis so I'm not sure if they are still elevated now, it would be interesting to know.

Morey53 profile image
Morey53 in reply toJulietilly22

I can really sympathise- it’s a pretty horrid illness and from what I have been reading (on this forum and elsewhere) that the outcomes of any thyroid conditions are very variable and unpredictable. One night in Sept I really thought I was going to have to go to A&E as I woke with a really high heart rate and felt dreadful.

I have been fortunate though in having good care and follow up, and I will also supplement with private blood testing as needed, particularly with my B12, vit D and iron.

I really hope you are doing ok- when you read about subacute thyroiditis it is made to seem like a transient issue that is self limiting but that isn’t really how it feels!

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