I posted many years ago about the rocky journey I've had with my thyroid. It's been 11 years since it went haywire having been perfectly well for 30 years on 100mcg following a thyroidectomy nearly 60 years ago. I am extremely sensitive to levo and can only tolerate small doses. I had been doing ok for a while on 12.5mcg 5 days a week until earlier this year when the old hyper symptoms returned. I lost a lot of weight I can't afford to lose and had horrible shaky, jelly legs feeling, racing heart/palpitations and bowel issues. Bloods showed low TSH. I know many people function best with low TSH but my sweet spot is between 2 and 3.
TSH 0.21 (0.35-4.95)
FT4 12.2 (9-19.1)
GP recommended stopping levo due to very unpleasant symptoms and having bloods redone in 6 weeks. The result of those bloods are
TSH 1.22 (0.35 - 4.95)
FT4 12.3 (9 - 19.1)
FT3 4.4 (2.4 - 6)
The last time I stayed off levo for 6 weeks my TSH jumped to 36 so I can't understand why it's only 1.22 now. I had expected it to show a much higher TSH. in the last 11 years my TSH never goes much higher than 13 ni matter where the TSH is.
I am now very tired but I'm still having palpitations and some jittery/shaky feelings with dizziness/lightheadedness. I can't figure out whats going on. The doctor requested Anti TSH receptor antibodies but the lab didn't do it. I've had a full cardiac work-up and my heart is fine.
I have an appointment with a new endo next week. Anyone any ideas? I'd like to be as prepared for her as possible.
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Agho
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If you have not been on a good dose of Levo for a long time its highly likely that you have low if not deficient vitamin levels. Being hypo brings low stomach acid which means we cannot absorb vitamins well from our food.
Low vitamin levels mean symptoms in themselves but also can cause tolerance issues. Low vitamin levels can reduce TSH.
Could you ask the Endo to test ferritin, folate, B12 & D3 levels? When you have the results then start a new post and members can comment.
I see that you are in Ireland. What brand of Levo do you take usually and do you always get the same brand?
was your thyroidectomy a complete thyroidectomy or only a hemi thyroidectomy
Have you had recent ultrasound scan of thyroid
If not request this done
Thyroid can occasionally grow back
Your Ft4 and Ft3 results suggest your thyroid levels are on low side
FT4: 12.3 pmol/l (Range 9 - 19)
Ft4 is only 33.00% through range
FT3: 4.4 pmol/l (Range 2.4 - 6)
Ft3 is better at 55.56% through range
Request GP/endo test vitamin D, folate, B12 and ferritin levels
Plus thyroid antibodies
Ideally get these tested BEFORE consultation
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test (and last dose levothyroxine 24 hours before test )
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Thank you both for your replies. To answer some of your questions -
I take Eltroxin and always insist on getting that brand. I always test early morning, fasting and without taking levo until after test.
I was told when I had my thyroidectomy that it had all been removed apart from a piece the size of my small finger nail. A scan a few years ago showed it had regrown and was showing signs of thyroiditis which my then endo dismissed.
I have had Vit D tested recently and it was 80 (50 to 100 optimal). Other vits not tested since 2017, GP won't do them. I have historically had low-in-range ferritin but iron supplements affect my digestion. I would like to get vits tested privately but don't know where in Ireland.
I'm puzzled about the fact that my TSH didn't rise a lot when i was off levo for 6 weeks and FT4 stayed the same
It does look like a functioning thyroid but I don't feel well which I should if thyroid is normal. I'm going to request another scan from new endo to see if anything odd is going on. Thank you for reply.
I had a total thyroidectomy last year. If you have a complete thyroidectomy, your TSH should be suppressed because the link between your brain and thyroid has gone. You are wholly dependent on levothyroxine for all your needs. Conversion of T4 to T3 can only now happen in your liver, kidneys and muscles. Your T4 is on the low side, it should be higher than that. T3 is OK but would be better if it was above 5. T3 is the active hormone that regulates metabolism and gives you energy. Ask your doctor to test your magnesium level. Magnesium is needed to convert T4 to T3. Low magnesium causes the symptoms that you are describing. You need 400mg magnesium daily. Other things to test because of your age would be vitamin D, B12, calcium, kidney function. Hope that helps.
Kidney function good, calcium 2.38 (2-20), Vit d optimal at 80 (tested in August, I supplement in winter so will be higher). Haven't had magnesium, ferritin or vit B12 done since 2017 when they were both in mid range. Ferritin has been low in range continuously but was never flagged as a problem.
Ferritin has been low in range continuously but was never flagged as a problem.
On levothyroxine we need optimal ferritin levels for good conversion of Ft4 to Ft3
How low was ferritin at last test
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Thank you all for the very useful advice. I had a very good meeting with the new endo today. She listened carefully to what I had to say and asked a lot of very pertinent questions. She is going to do all the bloods I asked for + some others. Apart from TSH, FT3 & FT4, testing of TRAb, PTH, Renal and Bone profile, Iron studies (Iron, Transferrin & Ferritin) and B12 and Folate will be done.
She has also ordered a thyroid scan and dexa. Depending on the results of all of these she may do a radioactive iodine uptake test.
This is the first time in all my years of suffering from thyroid issues that I've had such a comprehensive bunch of tests. I'm hoping something will show that will lead to a relief of the rollercoaster I've been on.
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