Are thyroid issues the real problem here?

[Lozzie999]

My problems are that I am experiencing the following symptoms :

Sores in the corner of my mouth

Constant constipation

Gradual weight increase

Poor memory

Depression - to the point I've had enough!

Aching joints on and off

Sleep disturbances (I get off to sleep ok usually but wake 3-4 hours later)

Feeling cold

Anxiety

Constant tiredness and fatigue

Because I have no thyroid I find that if I get just the smallest bit of stress my adrenals go into overdrive and I know that isn't good. I develop tremors and my mouth becomes dry. It's quite embarrassing

I had a total thyroidectomy in July 2009 and I also have CFS.

I am on Levothyroxine 50mcg daily,

Liothyronine 20mcg daily (sourced from Germany)

Evorel Conti 75mg twice a week.

I am also taking Vit D3 1000IU, Vit B12 1000ug, Hema Plex 85mg Iron.

I saw an Endo privately last October (GP wouldn't refer me) which including blood tests cost me over £800 and there is no way I can afford that again.

The blood test results were as follows:

FSH 68.5

Free T3 5.2 PMO1/L 3.1 – 6.8

Free Thyroxine 22.2 pmol/L12.0 – 22.0

LH 27.7 IU/L

Oestradiol 142

Thyroid Function test Serum TSH level 0.05 mIU/L 0.40 – 5.00IU/L

Serum Free T4 level 19 pmol/L 9.00 – 19.00pmol/L

Serum vitamin B12 769ng/L 189.00 – 883.00ng/L

Serum Folate 7.2 ug/L 4.80 – 19.00ug/L

Serum Iron 16.1 umol/L 7.00 – 26.00umol/L

Full Blood Count

Haemoglobin estimation 129g/L 110.00 – 150.00g/L

Total White cell count 7.9 10*9/L

Platelet count 212 10*9/L

Red blood cell (RBC)count 4.41 10*12/L

I am so fed up with feeling this way and cannot see the point of living to a ripe old age if this is how it's going to be.

I just want to be me again

I thought that having a thyroidectomy would end my problems but it just gives you a new set of different ones.

Any advice would be gratefully received , thank you.

[Clutter]

Lozzie999,

TSH 0.05 is suppressed, FT4 19 and 22.2 were both top of range and FT3 5.2 is over half way through range so you aren't undermedicated. There is a little scope to increase T3 dose to 25mcg or 30mcg raise FT3 to see whether symptoms improve but it will further suppress your TSH which your GP may object to.

B12, folate and iron look fine.

What was vitD result?

Sores in the corner of the mouth are not a typical thyroid symptom. Try supplementing 1,000mcg vitamin C to see whether they improve.

[Lozzie999 in reply to Clutter]

Thank you for your prompt response Clutter.

I'm afraid the test results are gobbledegook to me... I don't understand them.

I wasn't tested for Vit D. To be honest, the Endo asked for it but after all the others were done the cost had already reached £350 so I unchecked it.

The sores only started when I started taking the T3 so I naturally presumed it had something to do with it.

I'll definitely give the Vit C a go.

Thanks again

[Clutter in reply to Lozzie999]

Lozzie999,

If vitC doesn't clear up the mouth sores I suppose it's possible the sores are due to an allergic reaction to T3. Try an antistamine an hour before taking T3 for a week or two. If the sores clear up then you may want to ask your pharmacist for a different make of T3.

[Lozzie999 in reply to Clutter]

I did wonder if it could be the T3.

[Angel_of_the_North in reply to Clutter]

And vits B6, B2, B3 to balance B12 - angular chelitis is often B vit deficiency and/or candida.

[Lozzie999 in reply to Angel_of_the_North]

Thank you. My GP gave me Hydrocortisone cream to put on them but they always come back. Id like to know what is causing them 😊

[marsaday]

Your t4 levels are quite high considering you only take 50 t4.

If this issue was related to the t3 I would try seeing how you feel off the t3 for a day or two. Then drop it to just 10mcg per day.

What changes do you experience?

Going down on the thyroid meds can often be as useful as seeing what an increase is like.

If you feel even worse on less this is good info and would point to under medication. If you feel better then it’s over medication

[Lozzie999 in reply to marsaday]

Thank you Marsaday...all feedback gratefully received.

[shaws in reply to Lozzie999]

Did you leave a 24 hours gap between your last dose of levo and the test and take it afterwards?

[Lozzie999 in reply to shaws]

Yes. I took the Levo after I'd had the blood test done.

[SlowDragon Administrator]

Definitely need vitamin D tested

Vitamindtest.org.uk £28

In future it's MUCH cheaper to get thyroid and vitamin tests via Medichecks or Blue Horizon

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, and T3 12 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

[Lozzie999 in reply to SlowDragon]

Thank you so much for that information Slow Dragon. I had no idea you could het blood tests done anywhere other than the GP surgery or a hospital. You learn something new everyday.

[SlowDragon Administrator in reply to Lozzie999]

Hundreds , if not thousands, on here use these private tests.

Was thyroidectomy for cancer or Graves?

If Graves, you might find strictly gluten free diet helps, even after thyroidectomy.

[Lozzie999 in reply to SlowDragon]

My thyroid went overactive due to high stress levels. d already been diagnosed with CFS approx 3 years previously. I have been reading on here about a gluten free diet and am seriously considering it.

[shaws]

If you were also diagnosed with CFS it could be that you may feel better on T3 alone. I do know it's difficult to get a prescription from NHS but some source their own. I am not medically qualified.

I have read that 'three' new diseases were named some years after the introduction of levothyroxine along with blood tests i.e. ME, CFS and Chronic Fatigue. So I am assuming that before levo etc that everyone who complained of symptoms were given a trial of NDT which may have resolved their symptoms. The following is an excerpt from the link below:-

These examples certainly don't exhaust the possible mechanisms that can result in this pattern of hormone blood levels. What is important to appreciate is that problems of either the thyroid gland or the cells of various tissues can produce normal T4 but low T3 levels. If you have symptoms of hypometabolism, and your lab result (a normal T4 and low T3) is consistent with repeated testing, further investigation is warranted to determine exactly what the mechanism might be. Since you have fibromyalgia, which means you have symptoms of hypometabolism, then further testing and investigation is certainly warranted in your case.

So, to simply answer your question: "My doctor said that this lab result does not mean I have a thyroid-related problem. Do you agree?" If the lab result is consistent with repeated testing, then I disagree. Your test result does not rule out a thyroid gland problem, and it does not rule out a possible problem in the cellular processing or action of thyroid hormones. Your symptoms are as important as your test results. Since your fibromyalgia symptoms indicate that you are hypometabolic, then some "thyroid-related problem" is a distinct possibility. Certainly, further testing is justified.and................

It will take some years for physicians to learn about peripheral resistance to thyroid hormone and to understand the odd test values these patients have when taking effective dosages of thyroid hormone. Patients with peripheral resistance must take TSH-suppressing dosages of thyroid hormone to have normal peripheral tissue metabolism. But there is nothing whatsoever harmful to these patients in having their TSH suppressed by these dosages of thyroid hormone. In fact, it would be harmful for most of them not to take such dosages. The adverse consequences include conditions such as fibromyalgia, chronic fatigue syndrome, and liver and cardiovascular diseases.

webmd.com/chronic-fatigue-s...

Could you be thyroid-hormone resistant?

Excerpt from following link:

Unfortunately, most physicians become alarmed when they measure the TSH level in such a patient and find it extremely low. Physicians have been taught that a low TSH level means only one thing in a patient taking thyroid hormone--the dosage is too high and is going to harm the patient. It will take some years for physicians to learn about peripheral resistance to thyroid hormone and to understand the odd test values these patients have when taking effective dosages of thyroid hormone. Patients with peripheral resistance must take TSH-suppressing dosages of thyroid hormone to have normal peripheral tissue metabolism. But there is nothing whatsoever harmful to these patients in having their TSH suppressed by these dosages of thyroid hormone. In fact, it would be harmful for most of them not to take such dosages. The adverse consequences include conditions such as fibromyalgia, chronic fatigue syndrome, and liver and cardiovascular diseases.

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

[Lozzie999 in reply to shaws]

It is scary making changes without a Doctors advice. I am so fed up of feeling rough all the time and I t want to feel any worse than I do now. I struggle at work as it is.

[Lozzie999]

Wow! So much information. I 've totally lost my faith in the medical profession.

[shaws in reply to Lozzie999]

Most on this forum have recovered their health by reading, asking questions, and many buy their own thyroid hormones. I know that some people will be nervous (I was) as it seems like a giant step to take our own hormones but it has worked for many and those who've recovered also post on the forum so that they can help struggling patients recover their health and sourcing their own thyroid hormones.

If I couldn't find any doctor or specialist to diagnose what was wrong with me and even had an op for "a web" I had in my throat and then was told I had no such thing - what chance has thousands who don't get diagnosed - I asked 'what was on the barium swallow' but I got no answer. Eventually it was a first-aider who suggested 'thyroid' which I had never heard of before. I got my own test and TSH was 100 and it was Thyroiduk.org.uk who helped me recover my health and that was before the forum was formed.

[Lozzie999]

Wow..thank you for sharing your story. I know I am in the early stages of trying to get my health back on track but I am determined to do it somehow and hopefully with help and support from people like yourself. I have learned alot today from different members and this was my first ever post so it's onwards and upwards from here on in! Thank you everyone.

[humanbean]

Sores in the corner of the mouth could be Cheilitis.

en.wikipedia.org/wiki/Cheil...

There are lots of different kinds of Cheilitis, and yours might be Angular Cheilitis or something else.

en.wikipedia.org/wiki/Angul...

Hope you find something useful in the above links.

If you want to go private again, bear in mind that paying to see a doctor isn't essential. You can get private lab testing done without involving a doctor at all. It cuts the cost of testing down a lot!

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

If you know what you want, be aware that there are often several ways of getting the tests done that you want. There are regular money off offers for some companies. Sometimes using the preset test bundles can save a lot of money. So, check on the forum to see if you are picking the best options you can at the least cost.

[Lozzie999 in reply to humanbean]

Thank you humanbean. I will check out the links 😊