Where to go from here?

I have Hashi’s and was diagnosed in 2010. I had ME between 1990 and 2007 and recovered completely. I have had problems with the levo dosage for a couple of years, having ‘hyper’ symptoms when my dose is raised. I have been on 75 mcgs levo since August last year, when it was dropped from 100. I have never felt quite right on levo, always feeling slightly ‘sluggish’ at the apparent correct dose.

I have been feeling unwell since last December. Two things happened around that time: I took Thyro gold for four weeks in November and, very stupidly, and not intentionally at all, took too much for four weeks, felt ill (hyper symptoms) and stopped taking them. In December I took a different brand of levo (Wockhardt) to my usual one. I posted about this on the forum. I began to have episodes, about 2 a week, of panic/anxiety with a racing heart. Other symptoms included inability to sleep, the Runs and loss of appetite. I also noticed a strange ‘stress response’, shaky, faint and sick. I did an adrenal stress profile which indicated elevated post awakening and midday levels of cortisol. DHEA was low. In January my GP ran TSH, which was .35 (.3-5.5) and free T4: 16.9 (11.5-22.7). She did not think my thyroid was the problem and did not want to take further action. I am planning to change GP in due course.

In February I started taking herbal adaptogens, prescribed by a medical herbalist for the stress symptoms. These have helped enormously and the adverse stress responses have reduced. I also took up meditation again after many years. I take regular supplements: complete EFA, selenium (400ug), B complex, evening primrose oil (1300mg). I haven’t addressed magnesium and zinc yet, I am afraid. I also made an appointment to see an endo privately. In February, he ran some tests as follows and asked me to return in March. At this point he did not run thyroid tests as he had my GP’s results from January. He ran a test for a rare disease of the adrenals, which came back normal. These are the results:

Serum B12 257 (190 663) (I started taking supplements daily after this result and the latest results for this are 609 (223-1132)

Serum folate 12.1 (4.6 – 18.7)

Vitamin D 89 (50 – 125) (I take 1,000 I.U. daily)

I also had liver function, bone profile, calcium and coeliac tests done which all came back normal.

About two weeks before I was due to see him in March, I decided to reduce the levo dose to 62.5 as I was finding the panicky episodes very debilitating. By this time I had stopped work. I began to feel better for a few weeks, and when I returned to the endo, in the middle of March, he told me that I had probably ‘found the solution myself’ and some people ‘do better at the bottom of the normal ranges’. This did set alarm bells ringing, I must admit. He told me he would run further thyroid function tests in May and to return to him then. However, I no longer feel well on 62.5 mcg of levo. For the last four weeks I have felt considerable malaise and fatigue particularly in my legs, pins and needles in my arms and feet, gritty eyes, mild hair loss and headaches. These symptoms are getting worse. I decided to raise the levo to 75 mcg on alternate days from last week (after I had had the blood tests) but don’t feel much different yet. I had some more bloods done last week and these are the results:

TSH 1.9 (.3 – 5.5)

Free T4 17.5 (11.5 – 22.7)

Free T3 4.2 (3.1 – 6.8)

To me, the TSH looks too high and the T3 is too low. It was 5.2 in June last year.

I spoke to the endo on the telephone today and he said that my symptoms are not likely to be thyroid related as the tests are normal and asked if I had had a virus (which I haven’t). He said we could discuss this further next week. I am due to meet with him next Friday and would be grateful for some guidance, pointers. My aim is to try either NDT, or T4/T3 combo, something which might make me feel better.  Thanks for your help.

4 Replies

  • I don't know why they pronounce - 'it's not thyroid related'  when the patient still has clinical symptoms whilst taking replacement hormones. It puzzles me - maybe it shouldn't when I know they wouldn't know one never mind a whole bunch of symptoms.

    My point of view is that if we are on an optimum of thyroid hormones we should have no symptoms at all and feel well. 

    We have the symptoms and they only look at a piece of paper with a graph and then pronouncing 'fit and well' the blood test tells him that!.

    Your TSH could be lower around 1 or lower or suppressed for some. Your FT3 could be higher suggesting an increase is required. I think you should ask him for a 3 months trial of 20mcg of T3 added to levo. :)

  • Thanks Shaws, I sort of feel better knowing that my T3 has been around 5 when I felt OK and the TSH needs to be about 1 (it was suppressed last year) so it must be the thyroid hormones which are making me feel ill. What else could it be as all the other tests they did are normal?! I think your suggestion of a T3 trial is a good idea. I have a slight concern about Reverse T3, if my cortisol levels are high, which might prevent the T3 from getting to the cells.

  • Reverse T3 is a normal function, so I believe, as it helps the T4. Excerpt:

    Under normal conditions, cells continually convert about 40% of T4 to T3. They convert about 60% of T4 to reverse-T3. Hour-by-hour, conversion of T4 continues with slight shifts in the percentage of T4 converted to T3 and reverse-T3. Under normal conditions, the body eliminates reverse-T3 rapidly. Other enzymes quickly convert reverse-T3 to T2 and T2 to T1, and the body eliminates these molecules within roughly 24-hours. (The process of deiodination in the body is a bit more complicated than I can explain in this short summary.) The point is that the process of deiodination is dynamic and constantly changing, depending on the body's needs.


  • That is a very interesting article, particularly that impaired T4 to T3/reverse T3 is a temporary phenomenon in high stress (therefore high cortisol) situations and not likely to last longer than a few weeks. It makes me feel much better and more in control of the management of my condition, as I have always found the 'adrenal fatigue' issue rather complicated to get my head round. I'll stick to the herbal adaptogens for a while and continue meditating! Thanks Shaws.

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