Hi people, I'm new to this forum but am a member of the brain injury forum.
I'm curious why no treatment is offered till your body has destroyed your thyriod?
I've had awful symptoms that both reflect hypothyroidism and hyperthyroidism since my injury in 2018 but predominantly hypo, once to the point I was so unwell I should've gone to A&E but as I'd been totally ignored (not listened to) by my GP and even my neurology Dr I just thought it was really bad flu and had no idea how very seriously poorly I was.
I'm on degesterol now (since my first endo appointment in March of this yr) for "menstruation" symptoms which have helped some, but I'm still not 100%
If I ask them, now that my blood results actually prove I'm unwell, will they treat me because my letter just says to monitor 😤
I'm confused and need some knowledge.
Thanks for reading
Much love
Tinks 🐈⬛ x
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Tinks101
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I don't think the TPO matters, it just puts you at risk of Hashimoto's. Your low normal TSH and fT4 (both together) are more relevant. Do you have an fT3 result? An endocrinologist is likely to have run TSH, fT4 ,and fT3.Given your head injury history there is a chance your pituitary could have been damaged, this would present with TSH, fT4 and fT3 all being low or low normal. Thos could also affect other hormones.
No, I can't see an fT4 result on here but he did say that I don't have a pituitary issue but at the same time I need monitoring for my immune results?
I'm clearly suffering this following my brain bleeds and am still struggling to forward think, constant fatigue, weight gain (two dress sizes) broken skin issues, thinning hair, high cholesterol etc. I feel hungover most days and I don't drink anymore.
Is it not a good thing to treat my obvious ongoing symptoms or is it dangerous in some way?
I don't understand the reasoning to wait till I'm either very unwell or my bloods tell them so.
The wait is to see if your thyroid fails as a result of autoimmune attack. It's silly because you are ill now. You really need TSH, fT3, fT4 result. I'm surprised an endocrinologist didn't run fT3, it's unusual, I'd double check their qualifications.You can get a finger prick test for less than £30. I would get copies of all your results to see if there is evidence of pituitary failure.
That is terrible, fT3 can jump around in Graves' and the assay is dirt cheap.These endos always run fT3 for their private patients so they are either doing unnecessary investigations in their private practice or denying NHS patients appropriate vare. Either way it is unethical.
Well, first of all, can you define what you mean by 'treatment'? If you mean something that will cure your Hashi's, then I'm afraid you're going to be disappointed. There is no such treatment.
I wouldn't go so far as to say they wait until your immune system has destroyed your thyroid, but you have to understand what the 'treatment' is. As medical science stands, all they can do for you is to replacement the thyroid hormone that your damaged thyroid can no-longer make enough of to keep you healthy. Thyroid Hormone Replacement. That is all they can do.
However, if the damage to the thyroid hasn't reached that point yet, thyroid hormone replacement will not help you - too much thyroid hormone can be as bad as too little.
So, if we look at your blood test results, what are they telling us?
TSH - which is mainly what doctors look at - is 0.74, which is euthyroid. So, obviously your pituitary doesn't think there is a problem.
FT4 - basically a storage hormone that doesn't do much until converted into T3 - could be low, but as you haven't put the range, we can't really tell. Please, always put ranges because the vary from lab to lab.
Unfortunately, due to apalling ignorance, doctors don't take much notice of T4 unless it's under-range.
TPO antibodies - these indicated Hashi's - or as UK doctors call it: autoimmune thyroid disease - if they know what antibodies are, that is. Unfortunately, due to their pathetic education, most of the don't. Or they think that the antibodies are of no importance.
So, looking at those labs, very few doctors would actually understand a need for any treatment. Your TSH would have to be at least over-range on two consecutive blood tests, + high antibodies + very low FT4.
Unfortunately, symptoms often proceed anomalies in blood test results. And, also, with Hashi's levels tend to jump around a lot. So, you're certainly not going to get a diagnosis on the basis of one blood test, I'm afraid. Have you had others?
But it would appear that you also have an added complication. You say that you've hopped over from the Brain Injury Forum, so I take it you've had a brain injury? Do you know if the pituitary was affected? Because TSH, so dear to the hearts of most doctors, is a pituitary hormone. And the NHS in its infinite wisdom (?!?) has decreed that the TSH should be over 10 before you can be diagnosed (although having high antibodies does help with diagnosis). But, if your pituitary is damaged, your TSH might not every rise very high, no matter what your thyroid hormone levels. So, that is something to take into consideration.
And, have you had your nutrients tested? Vit D, vit B12, folate, ferritin? These are often low in people with thyroid problems, and they can cause terrible symptoms of their own. So, if you haven't already, best to get them tested and supplement where necessary - we can help you with that.
I do hope I haven't confused you with my stumbling explanations. If something isn't clear, please do ask.
OK, so your FT4 is very low - should be more like 50% through the range. But your TSH doesn't reflect that - one would expect it to be much higher. So, I think that whoever told you you didn't have a pituitary issue was wrong - it's either the pituitary or the hypothalamus, but in any case, not enough TSH is being produced to stimulate your thyroid.
Your vit D is low should be more like 100.
As for your folate... As a general rule, never, ever take nutritional advice from a doctor, they know nothing about it! Your bloods may have said that your folate level was good, but it most certainly didn't say you no-longer needed it. If your stop taking it, your level will just drop again. For some reason, doctors find that difficult to understand.
Oh wow, so what do I do? I'm being treated at Salford Royal and from the get go I wasn't happy with my Dr. I believe there's another Dr who I've read about. Apparently she's brilliant.
I've learnt to listen to my body, so I kept some Foliate to take, sometimes it really lifts me, then it just doesn't.
Is it possible to see this doctor? If so, it would be a good idea to do so. What sort of doctor is treating you at the moment? Is he an endocrinologist? If not, maybe you should try to see one of those.
Just taking folate on its own is not likely to help much. folate is a B vit - B9. There are 8 major B vits (no, don't look for logic!) and they all work together so should be kept balanced. You'd probably be better off with a B complex containing them all. But make sure you get one with methylfolate, rather than folic acid, it's usually better absorbed.
Well, endos aren't always the best people to see about thyroid. 99.9% of them are diabetes specialists who know next to nothing about thyroid. So, yes, you need a second opinion, but you need to chose your endo wisely. Ask for recommendations on here, for endos that know about pituitary problems.
but the end result is going to be the same isn't it.
Well, it's not quite as simple as that. Because the pituitary makes lots of other hormones, apart from TSH. And they could all be low and causing symptoms. So, they need testing, too. Which is why you need an endo that knows about multiple hormones.
Have you ever had your cortisol tested? Cortisol is an adrenal hormone. And to produce it the adrenals need stimulation from a pituitary hormone - ATCH - just like the thyroid needs TSH. So, if you haven't already, that would be a good place to start.
I've just looked at my March results and it says Serium cortisol ^511.It would be so much easier if I could screen shot you all my results.
Bloods are so complex and none are explained in great detail. I asked for more investigative bloods but he refused, that's when I asked for my antibodies to be tested.
OK, well can't say for sure without a range, but that cortisol looks high.
I don't think it would be very helpful to screen-shot all your results, because I probably wouldn't know what half of the were. But, was it due to blood tests that the endo said you didn't have a pituitary problem? How long ago was your head injury? And how long after did he do the blood tests?
Bloods are complicated - we're complicated creatures - but the problem as I see it is that doctors don't understand much about them, either. They are notoriously bad at interpreting blood test results. But there are some very experienced people on here that do understand. So, if you ever have a question about a blood test, don't hesitate to ask on here.
And it makes me so cross when doctors refuse to do relevant blood tests! How can they expect to find the problem without the right testing? I can only conclude that they don't really care.
The cost of private blood tests varies depending on the test, but you'll find a list of private testing companies here:
Hiya, I managed to get an appointment with my GP this afternoon and it was a big fat no to any treatment to help elevate my symptoms. He tried to suggest one of three things.. chronic fatigue syndrome!PTSD! Wtf? .. yeah from not being heard by you quacks.
And some other ridiculous possible problem (I can't remember) probably depression.
I burst into tears out of pure frustration.
Anyway, he's going to do my bloods in 6 weeks and I asked (because I had nowhere else to go) for my thyroid to be scanned.
He said there's nothing wrong with my thyroid and if he prescribed the replacement it will be toxic.
I stressed that I feel awful all of the time and I'm symptomatic but he would have none of it.
I'm currently eating crap to try and forget about it.
I'm afraid that really doesn't surprise me because your TSH is low-ish in range and that's all he's looking at. He doesn't know enough about thyroid to understand that the TSH is too low compared to your Frees. He just doesn't have the knowledge/education to make the connection. Plus he knows nothing about symptoms. None of them do.
Did you mention your head injury and possible damage to the pituitary? Probably wo
uldn't have made much difference but worth a try.
I'm so sorry you've had this upset, but it happens all the time. Doctors are so woefully ignorant about thyroid. In all their seven+ years in med school, they only spend about one afternoon on the whole of the endocrine system. And the endocrine system is vast. And the trouble is, because they've been to med school they think they know it all and we're just attention-seeking idiots.
But there are endos out there that do know about the pituitary and how the TSH relates to thyroid hormones. They're rare but they exist. There are people on here who have managed to get diagnosed with Central Hypo, so don't give up hope. Ask for recommendations, be prepared to travel, and you'll get there in the end.
Besides, your Free levels are not going to stay in-range forever. What with the lack of TSH and the high antibodies, they are going to drop below range eventually, and then they won't be able to ignore you anymore. I know that's not much comfort, but it's a fact. In the meantime, I'd stay away from your GP if I were you. He's of no use to you. As well as a lack of knowledge he has a closed mind. Oh, and if it's any consolation, he just trotted out the party line. They all read from the same script: it's not your thyroid it's fibromyalgia/CFS/depression/menopause/your age/your job/being a mother/being alive even! I was told it was my negatvie attitude making me ill! Anything but look for the real cause, anything to get rid of you and get back to their quiet, easy life. They hate us hypos, we're too much work. We require thinking about. And they don't like to have to think. So, don't take it personally. I think we've all been there at some point or another. So, have a good cry, enjoy your junk-food, then pull up your big-girl knickers and prepare to kick a**.
Hi Tinks , so....... regarding the raised TPOab level (i'm assuming 74 is over range) ....they can't treat the autoimmune aspect because there is no known treatment for that.
Only the resulting hypothyroidism can be treated if/ when it happens (by replacing the low thyroid hormones with T4 ~and sometimes T3).
raised TPOab in themselves do not indicate hypothyroidism (low T4/ T3 ) has happened yet .... they just show that due to the immune system damaging the thyroid gland , that person is more likely to end up becoming hypothyroid at some point in time ... for some that may happen quickly , but for others, that point could be decades away , or never.
In autoimmune hypothyroidism, TSH would rise and eventually over range, but yours has not
So presumably you are thinking about pituitary / hypothalamus issues due to brain injury ?
Central/ secondary /tertiary hypothyroidism is a different issue to autoimmune damage to the thyroid . In this case , the thyroid itself is fine , but pituitary/ or hypothalmus failure causes lack of TSH, so there is not enough TSH to stimulate the thyroid to produce T4/T3.
the treatment is the same for both ... replace the thyroid hormones (T4/T3). but getting a diagnosis for central hypo can be a long road if experiences on here are anything to go by .
is your fT4 low ? What is the reference range for that fT4 test ?
Folic acid is not exactly the same as folate from food. It needs to be converted to folate before the body can make use of it. And it turns out that only about 50% of the global population has the genes to do that well.
So, those people who can't convert folic acid into folate (or who do it very slowly) can end up with high levels of folic acid in their bloodstream.
I once emailed one of the test companies used by people on this forum to ask what the folate test was actually measuring. Was it measuring folate or folic acid? The reply I got was condescending and utterly stupid so I still don't know. I should have followed it up but didn't.
The simplest way round this folic acid/folate problem is to ditch folic acid and supplement with methylfolate. Methylfolate is an active form of folate. It will do its job for everyone irrespective of whether or not they can convert folic acid because no conversion is required.
Hi Tinks I have central (also known as secondary or tertiary) hypothyroidism. It's unknown whether the cause is at pituitary or hypothalamus level. I've also, like you, had head trauma. MRI is scheduled but I've already recently got treatment for my hypothyroidism. My FT4 and FT3 are in range but absolute bottom and TSH normal. Awful symptoms for years...
Please take a look at my bio in my profile. It details my background and how I got treatment. BTW, I also have autoimmune thyroiditis evidenced by thyroid ultrasound. So - you can have both central and primary (at thyroid gland level) hypothyroidism at the same time. They are not mutually exclusive.
This forum has been amazing with great advice and very supportive members.
I doubt your pituitary has been studied to any great extent even though you've had a brain injury.
My pituitary is "not normal", and my TSH never rises high enough to stimulate my thyroid adequately.
Throughout my life I had a few head scans for various accidents (I've always been clumsy) but I can't remember what kind of scans they actually were i.e. I don't remember if they were X-rays, CT scans, or MRI scans. Nobody ever told me that there was a problem with my pituitary or anything else.
That is, until my 50s, when a CT scan given to check for a suspected stroke came up with an unexpected result, and an MRI scan confirmed that I had a problem. I eventually ended up being told this problem was one I was probably born with, but nobody had spotted it before.
...
Brain injuries can cause lots of blood loss. Did you have surgery as a result of your accidents? They can cause lots of blood loss too. I've developed anaemia after some quite small surgeries.
Have you had any blood tests to check your iron levels (i.e. an iron panel) or any other nutrient levels? Have you had a Full Blood Count (FBC) done recently? (Although an FBC is not that good at identifying anaemia or low levels of nutrients it can be useful to supply additional information.)
When my iron and ferritin (iron stores) are low it can be difficult or impossible to tell which symptoms are caused by the low iron and which are caused by my hypothyroidism.
Some people have major problems with low B12 and/or folate, so it is worth knowing those levels too.
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