Hi, I'm new to the forum and happy to have found such a knowledgeable site. I'm hoping someone can advise me on what my next steps should be.
A little bit of background, for years now I have been having blood tests and been told that my results are within normal range. Even though they seem to be at the lower end of normal to me. These are my symptoms
Depression/anxiety
thinning hair (trichologist thinks this could be down to my low ferritin levels)
High blood pressure and raised cholesterol
Recently I have noticed that my voice has become quite hoarse and raspy sounding
General low energy and lack of motivation
Osteopenia
Unrefreshing sleep (broken sleep and very vivid dreams)
Restless leg syndrome
Heart palpitations
Tinnitus
This list isn't exhaustive but basically I feel really crap most of the time!
I just requested more blood tests and here are the results
serum tsh level 0.92 m U/L (0.25-4.20)
serum freeT4 level 11.8 pmol/L (11.0 - 25.0)
Although these results are within normal range they definitely seem at the low end of normal to me. After researching online (and getting very overwhelmed with all the info!) these results could be indicative of secondary hypothyroidism.
The last set of tests I had also came back at the low end of normal but when I queried this my gp said it couldn't be a problem as my tsh would be at the high end of normal if this was the case. Now that I have read a bit more I don't think this is correct.
I would be so grateful if someone could advise me. What should my next step be with these results?
Written by
gillian23
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You've posted about this a few years ago and I'm sorry you haven't found any help yet.
Indeed it could be secondary hypothyroidism or perhaps your vitamins are extremely low which is very common in hypo people and then the TSH doesn't respond so well.
You could possibly ask for recommendations for an Endocrinologist and see then privately or get referral on the NHS.
You could find a more open minded GP at your practice and try them.
Its very important to be working on low vitamin levels caused by low hormone levels.
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 London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
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.
Im so sorry Id completely forgotten that I'd previously posted about these issues and Im shocked that its been so long and I've still not got any further on!
I did have a private blood test some years back, unfortunately I no longer have the results but Im fairly confident that all vitamins apart from folate came back normal. I THINK that thyroid antibodies were tested as well.
Sounds like it's time you did another private test, then.
thinning hair (trichologist thinks this could be down to my low ferritin levels)
Most certainly could. Or other low nutrient levels. When did you last have any of them tested?
Osteopenia
Not even sure that that is a real thing. Often what is called osteopenia is the natural thinning of bones as we age, not a disease. Doctors just use the term to frighten patients.
Restless leg syndrome
That could be down to low ferritin/iron, too.
The rest are typical hypo symptoms - which isn't surprising given the level of your FT4! Your doctor knows nothing about 'ranges' - or 'reference interval' to give it its correct name.
The last set of tests I had also came back at the low end of normal but when I queried this my gp said it couldn't be a problem as my tsh would be at the high end of normal if this was the case.
S/he is assuming that your pituitary is working perfectly - a mistake that too many doctors make! There is absolutely no reason to assume that the pituitary will always work perfectly - if the thyroid can fail, why not the other endocrine glands? It's totally illogical to reason like that.
Thanks to everyone for taking the time to reply. I think I'm confusing myself with all the reading online- should tsh ideally be on the lower side? How Im understanding things is that a raised tsh is not good?
TSH (Thyroid Stimulating Hormone) is a message sent from the hypothalamus and pituitary to the thyroid, asking it to make more or less thyroid hormone (T4 /T3)
This is the HPT axis ( hypothalamus /pituitary/ thyroid ) .. it's a feed back / feed forward loop.
low thyroid hormone levels act on the hypothalmus and pituitary to cause the TSH to go up .. (and high thyroid hormone levels cause TSH to go down).
TSH then acts directly on the thyroid gland stimulating it to make more T4/T3 if TSH is high ( or less T4/T3 if TSH is low )
When hypothalamus and pituitary are working correctly, if there thyroid isn't making enough T4 / T3 for some reason , then the TSH level rises to 'ask' it to try to make more.
So a raised TSH is 'not good' . it's asking for more thyroid hormone to be made because the hypothalamus and pituitary have noticed their cells have low levels of T4/T3
The most common reason for the thyroid to stop making enough T4/T3 is that the thyroid gland is damages due to autoimmune damage ... and when this happens you would expect TSH to go up and eventually go over range , and stay there (until you managed to get some thyroid hormone from somewhere else) ~ this is 'primary' hypothyroidism.
The less common reason for the thyroid to stop making enough T4/T3 is that there is nothing wrong with the thyroid gland itself , but it is just not being asked to make enough ... because there is something wrong with hypothalamus / pituitary.... so they are not making enough TSH .. and if you don't make enough TSH , then the thyroid isn't asked to make enough T4/T3.
So in this circumstance you end up with a low T4/T3 AND a low TSH ~ this is 'secondary' / central (or tertiary) hypothyroidism , depending on whether the problem is with the pituitary (or hypothalamus)
GP's have difficulty believing anyone has secondary hypo , because they are taught it's very rare.
They also have difficulty believing anyone could have 'a bit of autoimmune hypothyroidism' AND 'a bit of a secondary hypo problem'
Consequently in practice it is extremely difficult to get a secondary hypothyroid diagnosis with a 'low in range' TSH unless it gets bad enough that fT4 is significantly under range and TSH is also under range.
While result look like yours, you will have a struggle to get anyone to do anything.
Another member wrote an extremely good letter to the head of his endocrinology department and did eventually get a diagnosis and was prescribed levo .
to see a copy of his letter , look for a reply from UKmale_hypo near the end of this long thread ... healthunlocked.com/thyroidu...
the reply starts "Can you see this ?" and has a link to the letter .
Thank you all for your replies. Its not looking hopeful for a referral -so disappointing. I feel convinced that so many of the problems Im having are down to this. I forgot to mention that I also have hypoglycaemia, i wonder if thats also connected with the pituitary gland not functioning as it should.
yes looks as if i will have to try and get the money together for blood tests-unfortunately seeing a private gp is just not an option for me due to financial constraints
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