Is it a thyroid problem or Fibro?

[Di588]

Hi all, I'm new and hope you can help! I have Hypo and take 2 x 25mg daily and have done for about 4 years. At the same time I was diagnosed with fibromyalgia ( refused to take the tablets after 12 months). Generally I'm 'well' except periodically I have a bad patch whereby I feel so unwell I find it difficult to function. I cannot describe how I feel ill, except a general feeling of unwell - so unwell that I think there must be something seriously wrong with me. Sometimes this can last a few hours, sometimes a week or more. I go to the doctors every 12 to 14 months, they tell me things are fine and never tell me the readings. My question is, is it a symptom of Hypo to have these periodic patches of feeling unwell (especially if I have over done things), or could it be Fibro? Sometimes I can wake up knowing I'm going to have a bad day and then it can lift during the day. Bizzare. Your thoughts are welcome....

[Clutter]

Welcome to the forum, Di588.

Doesn't fibromyalgia cause constant pain? As the unwellness is intermittent I think it is more likely to be due to thyroid. The Data Protection Act entitles patients to their test results so ask your GP receptionist for your recent results and ranges. Post them in a new question and members will advise whether you are optimally medicated. Ask whether thyroid peroxidase antibodies (TPOab) have ever been tested too. Having autoimmune thyroid disease (Hashimoto's) can cause fluctuation in symptoms and thyroid levels.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_... ___________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Di588 in reply to Clutter]

Thanks for a speedy reply. Fibro can have varying degrees of pain but also other symptoms. I think I need to read up and understand what the readings mean and then go to my GP but they keep changing. I also have medical insurance and wondered about insisting on seeing a specialist.

I think I will get the ball rolling with a visit to the GP and a new blood test.

Keep you posted.

D

[shaws Administrator]

Welcome to our forum

I assume when you say you are taking 2 x 25mcg that it is liothyronine (T3) and not levothyroxine.

There was a doctor, now deceased and I shall give you a couple of his links which will be informative. He ran the Fibromyalgia Research Foundation, Thyroidscience.com and Drlowe.com. These have now been archived but thankfully there is still info we can read.

You now have to, like most of us on this forum, read and learn more and take yur own health into your own hands (as much as possible.

On the following link you will see that Fibro patients are usually thyroid hormone resistant, which means they need more T3 than other patients.

web.archive.org/web/2010103...

web.archive.org/web/2010081...

Lots of info on the one below (see topics at top of page). On any of these links I've given, some links within the topics might not be accessed due to being archived.

web.archive.org/web/2010103...

I am assuming your 25mcg x 2 is not levothyroxine as 50mcg would be an extremely small dose. In the UK they have been told to only diagnose patients when TSH is 10 (some doctors luckily do take symptoms into consideration and may prescribe when lower than 10).

When you go for blood tests for thyroid hormones or fibro get the earliest possible appointment and don't eat before it although you can drink water.

Allow 24 hours between test and last dose of thyroid hormones and take them afterwards. This allows the TSH to be at its highest as it reduces throughout the day and taking food also lowers the TSH. The aim for you should be a TSH of around 1 or lower.

Also ask for Vitamin B12, Vit D, iron, ferritin and folate to be tested and thyroid antibodies too.

Always get a print-out of your results (we are entitled to by law) and say you want it for your own records) some surgeries charge a nominal sum for paper/ink.

If you have a query you can post but the ranges have to be stated because labs throughout the UK use different machines thus different ranges.

(I am not medically qualified and have hypothyroidism but take T3 only).

[Di588 in reply to shaws]

Thanks for the reply and the advise, I am on Levothyroxine and only on the 50mg because my Haematologist (unrelated) wrote to my GP and insisted I was on too low a dosage. Interested to note that Fibro patients are usually thyroid hormone resistant.

[shaws Administrator]

If you are only on 50mcg of levothyroxine I am not surprised you are feelin gquite unwell.

50mcg is an introductory dose on initial diagnosis unless the person is very frail with a heart disease. Increments of 25mcg of levo every six weeks until symptoms are relieved and patient feels much better.should be the way we are treated.

Your pain could be due very much to being on too low a dose. On a very low dose we are apt to get other symptoms we didn't have previously. The purpose of levothyroxine (T4) is to convert to sufficient T3 so that all of the billions of receptor cells in our body can function normally

If the T4 dose is too Low it stands to reason that the T3 will also be low or very low. So, you will now understand why we have to read and learn Of course the doctor will be following the guidelines!

The normal dose before blood tests and levo were introduced and patients were prescribed natural dessicated thyroid hormones was between 200mcg and 400mcg. Nowadays doctors try to keep you within a 'range' and that may be at the top of the range instead of 1 or below .

GPs don't normally check your free T3 and if you can afford a Private Blood test if GP would test FT4 and FT3 I'd get one. If your FT3 is very low in the range, you will not feel well at all. It rarely gets checked. We have a list of recommended labs and you can have a postal test.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

[morebeans]

Substituting some of my levothyroxine (T4) with liothyronine (T3) has taken away most of my fibro symptoms, so that's something you might want to aim for trying. Getting it prescribed can be tricky, tho'.

Best of luck for feeling better

[Di588 in reply to morebeans]

Thank you so much. I have been a bit complacent with 'this is how it must be', but I've had enough. I have a plan of action going forward so all info is gratefully received.

[humanbean]

Vitamin and mineral deficiencies are a common finding in people with hypothyroidism. Have you had any tests for vitamin B12, vitamin D, folate and ferritin levels in recent years? If you haven't you need to ask your doctor to do them. If you have had them tested then ask for copies of those results as well as your thyroid test results.

Then post them all on here, including the reference ranges and the units of measurement. We can give you lots of feedback on what needs to be supplemented, which tests haven't been done and need to be, whether or not your levo dose is high enough etc.

[Di588]

Thank you, I will.

[Di588]

Hi guys, I have my readings:

TSH 2.1

T4 17.8

B12 309

FILTRATES(?) MORE THAN 20

The doctor says ' no action' on the above but my T is 3.2 but the doctor has not seen this result as yet.

I am taking 50mcg and feel awful sometimes.

What you you guys think on these results - you are all so knowledgeable. I have a telephone consultation on Friday but given that the doctor has already said no action I'm not hopeful. Should I insist on seeing an Endo?

Thanks in advance

D