I have had such good advice from this forum I am hoping you can help me to help my friend. She is in her late seventies and is currently laid very low with a recurrence of her ME. She has had episodes of ME in the past and episodes of anxiety and depression. When young she suffered from thyrotoxicosis and was treated with tablets. She was monitored for a while and pronounced ‘cured’ as far as I know. She has never been on any thyroid medication since then. This last bout of ME is not shifting and I suggested she should do a Medichecks test and seek advice on here if the tests showed any signs of hypothyroidism. She is asking me to do this for her as she does not feel up to it. I hope that is alright.
To me the thyroid hormones, the Ferritin and the Vitamin D results all look poor and might be sufficient reason for her severe exhaustion, but I find myself wondering about low adrenals or a cortisol problem. Should these be tested too? Would a GP do this or should she seek private help? Thank you in advance for your help.
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Annib1
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Her Free hormones are far too low....aim forclose to 75%through ref range
Replacement hormone needs to be initiated starting with 50mcg levo.....retested and adjusted after at least 6 weeks on a steady dose.
Optimal nutrients
Vit D: 100-150nmol/L
B12: top of range for Total B12
Active B12 100 plus
Folate: at least half way through range
Ferritin: at least half way through range ... up to 90-110ug/L
Her symptoms all suggest hypothyroidism
Suggest she speaks to her GP asap with a view to being medicated...and ideally take someone with her!
I'm sure if she were to be correctly medicated with replacement thyroid hormone she would feel better.....but it will take time so patience required until therapeutic dose is achieved.
Realistically even though the positive antibodies show clear evidence of autoimmune thyroid disease, and she has a history of hyperthyroidism , an NHS GP will be very unlikely to prescribe Levothyroxine based on those results ........ she would have to find a 'willing' private endocrinologist , (or self treat) if she wanted to try thyroid replacement hormone.
Even when high TPOab / TGab antibodies indicate autoimmune thyroid disease , NHS GP's are not told to prescribe thyroid hormone replacement unless there is evidence it has developed into hypothyroidism..... or at least what they call 'subclinical' hypothyroidism. (meaning TSH is over range , but under 10 , while fT4 is still in range )
When TSH / fT4 results are both still in range , they will say there is no 'evidence' of hypothyroidism, even if symptoms are present .
They will sometimes agree to treat once there is evidence of 'Subclinical' hypothyroidism ie. once the patient has two over range TSH results, taken 3 months apart .
But in older age groups they assume TSH will be a little higher anyway .. and consequently NHS guidelines do not even tell GP's to 'consider' treatment for subclinical hypothyroidism for people over 65 until TSH is over 10
you can see what the NHS requirements are for starting treatment of hypothyroidism here :
(sub-clinical hypothyroidism = TSH over range, fT4 in range)
1.5 Managing and monitoring subclinical hypothyroidism
Tests for people with confirmed subclinical hypothyroidism
Adults
1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.
Treating subclinical hypothyroidism
1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.
Adults
1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."
That very low ferritin in itself is enough to cause severe fatigue. Her doctors ought to start by doing something about that - a full iron panel, for a start.
One thing at a time, I would say. Her cortisol probably is low, yes. But, the question is: is knowing that going to be helpful when she's not even going to get a diagnosis for her thyroid with that in-range TSH - which is all doctors tend to look at. Despite her low-level thyroid hormones and high antibodies, which confirm she has Hashi's.
I would say her first step should be to get that iron panel done and get her iron levels sorted. Then attack the vit D and B vits. See what that does to her thyroid hormone levels.
Doctors know even less about adrenals than they do about thyroid, so they might not even agree to test it. And if they did, unless it was spectacularly high or low, they wouldn't know what to do about it. To help her own adrenals raising her B vits and making sure she gets enough salt in her diet would be a good start. Plus lots of vit C.
Many thanks. We will go from there. I am slightly concerned that she has a pulse of 90 so starting with her GP and iron levels and B vitamins seems a safe way forward.
I am slightly concerned that she has a pulse of 90
In many people low serum iron and/or low ferritin (serum iron is what is in one's blood stream and ferritin is a measure of one's iron stores) will cause tachycardia i.e. a Resting Heart Rate (RHR) of 100+. If someone has been used to an RHR of, say, 60 for a long time, then it will feel very uncomfortable at 90+.
Note that GPs classify a normal RHR as being 60 -100, so won't pay much attention to a level of 90 but people can fix it themselves if they know that the problem is caused by low iron.
Please note that allowing either serum iron or ferritin to get high while the other is low is not a good idea. So, if serum iron is high and ferritin is low, taking iron might just push the iron higher while leaving the ferritin low. Conversely, if ferritin is high and serum iron is low then the ferritin might just get higher if iron supplements are taken.
It is a good idea when taking iron supplements to test regularly i.e. before supplementing, 4 - 6 weeks after starting to supplement then every 2 - 3 months after that unless progress is very slow when testing could be less often. You can post the results of an iron panel on the forum and ask for feedback.
To get a (private) full iron panel done with a finger-prick test :
Note that iron supplements of the kind that doctors prescribe can be bought from pharmacies in the UK without a prescription.
But some people have recently found that they do better with a different kind of iron supplement to the ones doctors prescribe which can be bought online :
Thanks so much for your suggestions! I have significant brain fog at present but will meet up soon with my good friend and she will help to unscramble me!
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