Current symptoms: bad muscle and joint pain (especially left arm, hands and wrists, feet and ankles, leg cramps); tingling, burning or stinging sensations in my feet, hands or lower arms; gritty sometimes painful eyes; brittle and ridged fingernails; constipation; usually tired; often breathless after any exertion; loss of drive; sluggish thought processes, poor concentration and very poor memory.
Blood test results (several months ago): Se thyroid peroxidase Ab conc 1072.8 iu/ml, Serum TSH level 7.2 mu/L and Serum free T4 16.3 pmol/L.
My GP said I had hypothyroidism. He prescribed me 50 mg levothyroxine. However, after 10 days I started to feel much worse – with more severe pain than before. I also got new symptoms: headaches, insomnia, early morning palpitations/panic attacks, and feeling really hot/sweating. So I got an urgent appointment with another GP. He told me to stop taking the levothyroxine. He said that I can’t have hypothyroidism because men don’t get it. He said I am suffering from stress. I stopped taking levothyroxine and reverted back to the symptoms that I had before I took it. I am not receiving any treatment at present. My GPs have told me to “relax” and “think positive thoughts.” I’ve been doing this for weeks and I feel terrible.
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See another doctor pronto. We have male members even though we have more female both can have hypothyroidism.
Doctors make me mad - telling someone to stop levo and then telling the person to 'relax and have positive thoughts'. As if someone whose body is crying out for replacement hormones can possibly do either except experience excrutiating clinical symptoms due to our body not having the hormones required in our millions of receptor cells. Levothyroxine is T4 alone. Levo converts to T3. T3 is the only Active Thyroid Hormone and our body relies on this hormone to enable our metabolism to work, from head to toe, heart and brain need the most.
Some people could react badly to levothyroxine. Try taking an anti-histamine tablet - you could be sensitive to fillers/binders in the one you have and if your symptoms are relieved it might be due to the make of levo.
However, 50mcg is a starting dose and we may feel worse initially as we cannot take large doses, it has to be very gradual i.e. start off at 50mcg with 25mcg every six weeks until symptom free.
You have an Autoimmune Thyroid Disease also called Hashimoto's (the commonest form of hypothyroidism) and it is the antibodies that attack your thyroid gland and sometimes you will feel 'hyper' (not hyperthyriod) as the antibodies attack your thyroid gland until you are hypothyroid.
Always get a print-out of your blood test results from the surgery after each blood test for your own records and post if you have a query.
Blood tests have to be at the very earliest, fasting (you can drink water) and allow 24 hours between last dose and test and take afterwards. This method prevents doctor adjusting our dose according to the TSH alone.
Levo should be taken first thing with one full glass of water (usually when we get up) and wait an hour before eating. Food interferes with the uptake of the hormones.
Next blood test ask for B12, Vit D, iron, ferritin and folate. Deficiencies can also cause clinical symptoms.
Try not to worry too much as many members will have had similar reactions to you.
You need a Free T4 and Free T3 blood test to see how much is circulating. These are rarely taken in the NHS.
25mcg is likely to be worse. It's enough to turn your own thyroid hormone levels down further but not enough to offer any help
Different brands suit different people
What brand of Levo did you start with?
Second doctor you saw was imbecile. Of course men can get Hashimoto's. Not as often as women, but they do.
How long did you take 50mcg? Bloods should be retested after 6-8 weeks and then dose increased in 25mcg steps (retesting each time) until TSH is around one and FT4 towards top of range and FT3 at least half way in range
How long since you stopped Levo? If more than 6 weeks be good idea to be retested before starting again
For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested
See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3
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 be done as early as possible in morning and fasting (and don't take Levo in the 24 hours prior to test, delay and take straight after). This gives highest TSH, lowest FT4 and most consistent results
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels stop Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
I think the brand of levo I took was ‘actavis.’ I only took it for 15 days. After 10 days I began to feel even worse than before. I also got the new symptoms I mentioned in my original post. By the 15th day I was seriously concerned about my health. I was told to stop taking levo and I was happy to do so.
I thought 25 mcg may be more appropriate for me because of my age. I am over 55. Moreover, I thought that I might be getting too much T4 because of my hyperthyroidism-like symptoms and because my Serum free T4 level is marked as normal in my blood test results.
FT4 should be in the upper part of the range, not somewhere within it. That's the mistake many doctors make when the patients' results are within the range they are satisfied that patient is on sufficient. We need a TSH of 1 or lower with FT4 and fT3 in the upper part of te range..
Too low a dose will give symptoms sometimes worse than before. If you find you cannot tolerate it at all you will have to talk to pharmacist who then might be able to give you another 'name' of a levo and ask doctor to prescribe. The doctor may only put levo so it is the chemist who will supply the 'make' from wherever he sources.
25mcg may be suitable for someone who is in very frail health with a heart disease.
We get palps as heart needs thyroid hormones and it is usually because we don't have sufficient hormones to drive our metabolism. So we can get palps with either too much or too little.
You have to use the reference range from the lab that did YOUR test.
Although sometimes more than one lab uses the same range, they do vary by lab. If you pick the range from one lab and a result from another - they will not give you a sensible answer.
Many NHS labs have websites - and they often have that lab's reference ranges.
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