I've just received blood my test results from monitor my health. I've got moderate/severe me/cfs 80% housebound. No energy. Looking for answers and think my thyroid is the problem. I'm seeing my diabetes consultant (endo) this afternoon. Should he act on seeing these results? My TSH is 0.28 (0.27-4.2)
I take 75mg thyroxine daily.
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I think your problem might be Central Hypothyroidism (CH).
Edit : Please note I'm not a doctor, I'm another thyroid patient.
The most common form of hypothyroidism is Primary Hypothyroidism (PH) and this is what doctors are more familiar with. Any suggestion that a patient has CH is often dismissed with the words "It's really rare", as if the person sitting in front of them can't possibly have it because they are ordinary. This is, of course, total codswallop. And I think CH is far more common than doctors will admit.
In PH the organ with the problem is the thyroid. For some reason, often autoimmune, it can't produce sufficient thyroid hormones for the patient's needs.
In CH the organ with the problem is the pituitary, or more rarely, the hypothalamus. In this case the problem is caused by lack of TSH. Your Free T4 and Free T3 are both low in range, and your TSH should be higher than it is. It is possible that your pituitary is not able to produce the right amount of TSH for your needs or your hypothalamus is unable to produce enough of the stimulating hormone required to stimulate the pituitary to produce TSH.
The problem with CH is that doctors can't diagnose and treat using the TSH, as they have been trained to do. It is diagnosis and treatment using TSH as guide that makes this forum so big because it doesn't work for lots of people.
In CH diagnosis and treatment should be monitored and treated using Free T3 (preferably) and Free T4 as guide, and many doctors haven't a clue how to do that.
The pituitary and hypothalamus produce quite a lot of hormones, and they are discussed here :
If your pituitary is the source of your problem you could be short of TSH alone, or, say, 2 or 3 of the hormones it produces or you could be short of all the hormones the pituitary produces. The same comments apply to the hypothalamus.
You would need to have someone check the health of your pituitary and hypothalamus with an MRI, e.g. to look for tumours or other disease, and also do tests to see what the level of your hormones are, and you would need to be prescribed something to replace what you are short of. In the case of CH they don't bother replacing TSH they just replace the Free T4 (and if you are lucky the Free T3 as well) so that you have enough for your needs.
Unfortunately, persuading a doctor to test for CH can be very difficult. There are a few people on the forum who have been diagnosed with it, but I don't recall reading about how they were diagnosed.
Thank you humanbean. My consultant wasn't interested in my private blood results. Said they're not always the best. I asked about the t3 trial. No chance, nothing proves it works. Also can have dangerous consequences. He gave me the name of a private endo who might prescribe. I asked for my bloods to be checked but nothing. I'm seeing a haematologist next week for neutropenia. I'm wondering if I'll have thyroid bloods done too.
Often Endo's go off TSH and yours looks good. Your free hormone reults are not good though so you will need to emphasise secndary or central hypothyroidism to them and your disabling fatigue. If you don't get results with this Endo then find a better one.
Are you taking any supplements if so what?
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private postal testing early Monday or Tuesday morning.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test. It’s worth trialling a strictly gluten free diet to see if it helps symptoms.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Thanks jaydee1507I'm taking selenium, vit d3 4000iu daily, magnesium, omega 3 ,brewers yeast, glucosamine, vit c, zinc. Folic acid 5mg on prescription.
My b12 was 719 Aug last year. Haven't had a vit d test for a while. I'm off all wheat products and have sourdough bread now and then. My appetite is really poor. I feel nauseous. Having gastroparesis means I feel full with a small amount of food.
Low thyroid levels can also cause poor appetite and your gastroparesis would be helped enormously with a dose increase.
Gluten free means completely, strictly gluten free. No sourdough. Gluten is in many foods not just wheat.
It would be worth retesting your B12 once you get your folate up. They work together.
Vit D is best taken with vit K2 to help it go to your bones. There are quite a few products that combine D3+K2, many members get on well with the Better you spray range.
Sorry Jaydee1507, I take the vit d3 with k2 together. I didn't realise about the sourdough. That explains why sometimes with different makes I get bad stomach pains.I'm going to up my thyroxine tomorrow 25mg. My gp doesn't listen to me about anything. Thank you xx
Yes SlowDragon it was done before 9am and my thyroxine was taken 9am the previous day.I dont take metformin. I have type 1 diabetes diagnosed age 43yrs I'm now 60yrs
Should I increase thyroxine myself and retest myself?
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