I am 51 and have been seriously ill for over a decade. The main culprit was discovered (by me!) in 2020 to be Growth Hormone Deficiency (GHD) and I started treatment for that in Nov 2020, the results of which have been life changing. (Prior to diagnosis and treatment my plan, if GHD was rules out, was suicide).
I still, however, have a bunch of continuing symptoms, which are all listed as hypothyroid symptoms, as follows:
cold extremities/pins and needles - hands, feet, genitals
Memory and cognitive function reduced (improved on GH treatment)
Sexual dysfunction - loss of libido
Easily upset
Anxiety (improved on GH treatment)
My latest thyroid test results show the following:
TSH 2.28 [0.27-4.20 mIU/L]
T4 11.2 [11.0-21.2 pmol/L]
T3 5.6 [3.1-6.8 pmol/L]
Also, in the wide ranging tests, there were the following:
Gamma-glutamyl Transferase 64 [1-55 IU/L]
Sex Hormone Binding Globulin 16.3 [20.6-76.7 nmol/L]
Cholesterol 6.7 [1.0-5.0 mmol/L]
Triglyceride 2.4 [0.5-2.0 mmol/L]
LDL-Cholesterol 4.5 [1.0-3.0 mmol/L]
Lipoprotein [a] 346 U [nmol/L] (<75)
Neutrophils 6.46 [1.50-6.30 10^9/L]
HbA1c (IFCC), 43 [20-41 mmol/mol]
HbA1c (DCCT), 6.1 [4.0-5.9 %]
Testosterone 10.3 [8.6-29.0 nmol/L]
My understanding is that low SHBG can be due to hypothyroidism, as can raised/abnormal lipids. I have also read that low SHBG can (counter-intuitively) cause testosterone to be low.
I have asked for a trial of Levothyroxine but this is currently being denied. One reason given is that they would expect my TSH to be higher, and therefore I do not qualify as having sub-clinical hypothyroidism. I think their reasoning here is both stupid and incorrect. They are saying that the TSH is a patient with KNOWN pituitary problems should be higher, yet there is nothing within their testing that has tested whether or not my pituitary is capable of producing enough TSH in response to low thyroid hormone. In fact it is perhaps clear that, with the very low T4, the TSH *should* be higher.
So, could I have your thoughts on this? Am I correct in saying that my thyroid function is too low? Can the low T4, even with mid-range T3, cause these symptoms?
TIA
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UKmale_hypo
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Hi - thanks very much for responding so comprehensively. Answering your questions in order:
Yes, 9am testing
Antibodies previously tested and OK
Previous US scan of thyroid unremarkable
Pituitary MRI normal
Tests all on 25th Aug:
Vitamin D 78 nmol/L (50-200)
Folate 7.8 ug/L 3 - 20
Ferritin 85 ug/L 25 - 200
B12 370 ng/L 200 - 910
I think they all seem comfortably within range. I am thinking that I have secondary/tertiary hypothyroidism due to my pituitary being underactive, as proven by the Growth Hormone Deficiency.
I agree central hypothyroidism should not be ruled out given your GH deficiency.
Are you on replacement GH meds? Have they investigated why you are lacking in GH? ie, investigations in a pituitary tumour common in adult-onset GH deficiency or head injury? Have you had other pituitary hormones tested?
Autoimmunity would seem unlikely given it usually only happens in a tiny percentage and you say thyroid antibodies test have proved negative.
Both the production and utilisation of thyroid hormones are iron & nutrient dependant. Others have given good advice already but I would add selenium to the mix. The adult thyroid gland holds the highest amount of selenium per gram of tissue, as is required for the production/utilisation of thyroid hormones and for its antioxidant properties. I take 100mcg of selenium a day.
Yes, a cause of low SHBG is hypothyroidism that results in low testosterone as the body tries to match hormone levels to the amount of protein carriers and vice versa. SHBG formation is stimulated by thyroid hormone (& oestrogen ) in the liver, and further controlled by testosterone and insulin. Therefore, given your over range HbA1c results, its really important to eat a diet that keeps blood sugar levels balanced (several small meals a day each containing protein and/or fats). Elevated HbA1c is another hypo symptom that should reverse when thyroid hormones are optimised.
Your body is keeping T3 levels higher at the expense of T4 in an effort to retain well-being but this is obviously unsustainable. You will need a good specialist to understand the physiology of central hypothyroidism. Thyroid UK (who runs this forum) has a list of doctors/specialists whom members have received good experiences with, and details on obtaining the list may be found here ...
I have asked for a trial of Levothyroxine but this is currently being denied. One reason given is that they would expect my TSH to be higher, and therefore I do not qualify as having sub-clinical hypothyroidism.
Clearly whoever is dealing with this hasn't heard of Central Hypothyroidism, which is not as common as Primary Hypothyroidism.
Central Hypothyroidism is where the problem lies with the hypothalamus or the pituitary rather than a problem with the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low. With your results of
TSH 2.28 [0.27-4.20 mIU/L]
T4 11.2 [11.0-21.2 pmol/L]
I personally think that your FT4 is low enough for Central Hypothyroidism to be considered a distinct possibility (I am not medically trained so I am not diagnosing, just pointing out that this could be the problem).
As T3 is the active hormone, the life giving hormone, your body will continue to make T3 as long as possible to keep you alive which is why it's FT4 that's looked at for CH.
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
In Primary Hypothyroidism, which is where the thyroid fails, the TSH will be high.
However, with Central Hypothyroidism the signal isn't getting through for whatever reason so the message isn't getting through to the thyroid to produce hormone, hence low FT4. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).
As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before.
Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed:
You could do some more research, print out anything that may help and show your GP.
You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email ThyroidUK at
tukadmin@thyroiduk.org
for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.
I would also ask for the key nutrients to be tested:
Vit D
B12
Folate
Ferritin
Low levels or deficiencies bring their own symptons, pins and needles and tinnitus are symtoms of low B12 for example. Come back with these results and ranges when you have them.
The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L (40-60ng/ml), with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L (50ng/ml).
So now you look at how much is needed to reach 50ng/ml and you'll see that they suggest 2,500iu per day. If you're not supplementing then I suggest you might want to do so and retest in 3 months.
Once you've reached the recommended level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.
D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.
For Vit K2-MK7 my suggestions are Vitabay, Vegavero or Vitamaze brands which all contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
Vitabay and Vegavero are either tablets or capsules.
Vitabay does do an oil based liquid.
Vitamaze is an oil based liquid.
With the oil based liquids the are xx amount of K2-MK7 per drop so you just take the appropriate amount of drops.
They are all imported German brands, you can find them on Amazon although they do go out of stock from time to time. I get what I can when I need to restock. If the tablet or capsule form is only in 200mcg dose at the time I take those on alternate days.
If looking for a combined D3/K2 supplement, this one has 3,000iu D3 and 50mcg K2-MK7. The K2-MK7 is the All-Trans form
Magnesium should be taken 4 hours away from thyroid meds and as it tends to be calming it's best taken in the evening. Vit D should also be taken 4 hours away from thyroid meds. Vit K2-MK7 should be taken 2 hours away from thyroid meds. Don't take D3 and K2 at the same time unless both are oil based supplements, they both are fat soluble vitamins which require their own fat to be absorbed otherwise they will compete for the fat.
Ferritin 85 ug/L 25 - 200
That's an unusual range for males, the male range usually goes up to at least 300, sometimes 400.
Ferritin is recommended to be half way through range so that would be 112.5 with your range.
You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
Don't consider taking an iron supplement unless you do an iron panel, if you already have a decent level of serum iron and a good saturation percentage then taking iron tablets can push your iron level even higher, too much iron is as bad as too little.
Folate 7.8 ug/L 3 - 20
Folate is recommended to be at least half way through range which wuld be 11.5 with your range. Eating folate rich foods may help and a good quality B Complex.
B12 370 ng/L 200 - 910
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Do you have any signs of B12 deficiency – check here:
If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results and if you have B12 deficiency is not detected and treated then this could affect your nervous system. B12 deficiency should be treated before starting folic acid because folic acid can sometimes improve your symptoms so much that is masks B12 deficiency.
If you don't have any signs of B12 deficiency then you could supplement with one bottle of B12 sublingual plus B Complex. Finish the B12 then continue with just the B Complex.
Suggestions for B12 supplements which include two forms of bioactive B12 - methylcobalamin and adenosylcobalamin which you might want to check out:
Note that the Nature Provides supplement contains a much higher dose than the Cytoplan one.
B Complex should be left off for 3-7 days before any blood test as it contains biotin and this gives false results.
Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.
Considering GH and TSH are both produced in the anterior pituitary, it seems reasonable to suggest, to consider, to investigate secondary hypothyroidism. Indeed, to me (in my ignorance) it seems absolutely obvious.
Baseline HbA1c levels were found to be significantly higher in hypothyroid patients, which reduced significantly after achievement of euthyroidism without any change in glucose levels.
Hi All. Huge thanks for all the very helpful comments above. I have an update.
I wrote a long letter to the lead consultant at the hospital, asking for a quick response. Almost unbelievably, I received a response which was both quick AND very satisfactory!
I have created a redacted copy of my letter, excluding my contact details and all names of consultants and hospitals, and you can see it here - dropbox.com/s/5onz8seoaid0n...
I received a response, a screen print of which I have attached; I hope you can see it.
I had already started on 25 mcg of Levo which I had acquired, and I intend to follow my own plan of going up by 25 mcg every 6 weeks and see how I feel. I will also get testing at an appropriate time.
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