I'm new here and would love some advice from people who actually know what they're talking about as I currently feel like I'm being fobbed off by everyone!
I am 42 years old, and have struggled with symptoms that I have always considered to be thyroid related but every NHS test came back as 'normal'. In the summer I saw a private endocrinologist who told my GP I have subclinical hypothyroidism. I say told my GP because she didn't actually tell me, I just got a list of blood results which obviously mean nothing to me, and it's only by chance that I saw my records on patient access last week while looking for something else.
I have very low levels of vitamin d, high iron (219ng/mL) and was told to take double doses of vitamin d for a couple of months, then to slowly drop down to a normal dose.
My TSH level is 4.93 and my free thyroxine is 14.2 (I have no idea what these levels mean).
I have always struggled with my weight, it's impossible to lose anything, I've been on 1200 calories for the past year where I managed to lose 1.5 stone but now it's slowly creeping back on despite the low cals. I have PCOS, endo, carpal tunnel, high blood pressure, I can't drink alcohol, very thin outer eyebrows, boils, infertility, severe PMT, extremely heavy periods (pre ablation which is the only thing they could think of to stop them, other than a hysterectomy at the age of 32), puffy hands, migraines, pressure headaches, back pain, and I've felt like I'm perimenopausal because I can't remember anything, I'm miserable and can't concentrate on anything - but now I'm wondering if this is also to do with my thyroid.
I have contacted the private doctors receptionist to ask to speak with her again, but I don't know what the rules are when it comes to 'subclinical' and what these results even mean if I'm honest. Trying to get a straight answer from anyone is impossible - if anyone has any advice or tips they would be gratefully received. My main concern has always been my weight but I'd actually like to feel alive and a lot less exhausted as well.
Thank you!
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Gingerella8
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All your symptoms sound like they could be due to low thyroid. But the problem with hypo symptoms is that they are non-specifid - i.e. they could be due to many other things. So, doctors tend to ignore them.
As to your blood test results, Your TSH is saying you are technically hypo. A euthyroid (i.e. no thyroid problems) TSH is around 1, never over 2, and at 3 you are hypo. But, the NHS likes it to get to over 10 before it will diagnose. It is cruel and sadistic, but truth to tell, they don't really believe that being hypo is a problem. Their attitude is that we are all whingeing, attention-seeking hypochondriacs, and yes, they do all they can to fob us off!
Can't say anything about the FT4 because there's no range. Ranges tend to be in brackets after the blood test result, and we need it to interpret your result because ranges vary from lab to lab. But, endos have a nasty habit of not including the range with the result when they write to you. Not quite sure why...
But, in any case, those two results do not paint the full picture. TSH isn't even a thyroid hormone, it's a pituitary hormone that tells the thyroid when it needs to make more hormone. So, the lower the thyroid hormone levels, the higher the TSH (in theory, but it doesn't always work out that way!). T4 is basically a thyroid storage hormone that doesn't do much until it is converted into T3, the active hormone. So, in an ideal world, they would also test the FT3, but they rarely do. I suspect that this is to avoid diagnosing too many people with hypo because they really hate doing that!
People with low T3 often have low stomach acid, which makes digesting food and absorbing nutrients difficult. Hence your low vit D. But if docotors know next to nothing about hormone, they know nothing at all about nutrients! So, your doctor telling you to 'drop down' to a normal dose - whatever that is! - is being unrealistic. Your vit D levels will just drop with it. To a doctor, a normal dose of vit D is about 800 iu, which would raise the levels of a sunburnt gnat! So, double that is not really a very high dose. But, I'm not really very well up on vit D, so can't tell you what you should be taking.
And, they never tell you to take vit D's co-factors - probably because they don't know about them! - magnesium and vit K2-MK7. So, just taking the vit D won't do you much good, anyway.
Your iron is high, ok, but did they also test your CRP? C-Reative Protein is an inflammation marker. High levels of inflammation cause false high levels of ferritin (which is what they test, not usually the iron itself), so the two should always be tested together.
To fill in a bit more of the picture you also need vit B12 and folate tested, because those are doubtless low, too. And low B12 will not only make you feel bad, but can be dangerous.
And, to complete the picture, you need your antibodies tested: TPO antibodies and Tg antibodies. If these are high, they will tell you that your hypo is due to autoimmune thyroiditis. The treatment is the same, but it's good to know for several reasons - which I won't go into at this point because I don't want to over-whelm you at this point.
You say that what bothers you most is your weight-gain. Well, it shouldn't be because there's very little you can do about it when you're hypo. And consuming only 1200 calories is only going to make things worse, not better. So, forget dieting - and exercise, come to that - and just concentrate on getting the other tests done, and supplementing your nutritional deficiencies for the moment, which will probably make you feel a lot better.
One step at a time! That's very important. And don't try to run before you can walk. Those are the golden rules of hypo treatment.
Thank you so much for your reply! Feel like I've got more knowledge from this than all my other appointments!
My FT4 ranges on the print out say 12.0-22.0 does that help?
My vitamin D level is 40nmol/L and they prefer it to be over 70? I can't see anything on there about antibodies, so I need to ask for FT3 & antibodies to be tested before I can get anywhere with a diagnosis? Should I be taking anything other than vitamin D?
I wish I could stop the dieting but I think it's ingrained in me now and I'm too worried to stop!
As Greygoose rightly says in the UK doctors normally wait until your TSH rises to 10, however they sometimes will treat if you have high thyroid antibodies, clearly showing autoimmune thyroid disease or Hashimoto's, named after the Japanese doctor who researched it. 90% of cases of underactive thyroid are autoimmune.
Or they might offer treatment if you have below range FT4/ FT3 levels, as I did. Its very stupid and short sighted as often when patients have high enough TSH levels and low thyroid levels they are very unwell indeed. I think the UK has one of the highest TSH cut offs in the world, elsewhere you can start treatment if your TSH is 3.
I'm not sure what the reasoning is, if its penny pinching as once you start on Levothyroxine you are medically exempt from all prescription charges. Or is it the ongoing cost of blood tests? Or a belief that sub clinical hypo isnt anything major?
Some sympathetic GP's might initiate a trial of Levo based on your highish TSH and symptoms. I think there is a link between PCOS and being hypo.
The other alternative, which many of us have to resort to are private blood tests, to keep an eye on your thyroid health and/ or sourcing your own thyroid meds, which is unacceptable but something many of us on here have to do. The NHS now often only tests TSH levels, instead of the actual thyroid hormones. More penny pinching.
My FT4 ranges on the print out say 12.0-22.0 does that help?
Yes, thank you. So, your FT4 is only 22.00% through the range, which is very low! Should be at least 50%. And, if your FT4 is low, your FT3 is probably going to be low, too. And that's what causes symptoms. So, not surprising you don't feel at all well.
My vitamin D level is 40nmol/L and they prefer it to be over 70?
Yes, well, as I said, they know nothing about it. It should be more like 100 when you're hypo - as you are. So it doesn't sound like the dose they've put you on is enough. I would suggest you write a new post, giving all those details about vit D, so that those that know can reply.
so I need to ask for FT3 & antibodies to be tested before I can get anywhere with a diagnosis?
Well, that might or might not help. Most doctors have no idea what T3 is! And only a vague idea about antibodies. So, they probably won't agree to testing T3, and if they agree to antibodies, it will only be the TPOab, not the TgAB. So, if you can, you would be better off doing your testing privately - there are companies that will do them without the intervention of a doctor ordering them. A full thyroid panel would consist of:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin.
Should I be taking anything other than vitamin D?
You should be taking magnesium and vit K2-MK7. Vit D and magnesium work together, so if you take vit D on its own, it will deplete your magnesium - and you're probably pretty low on that, anyway! Take about 400 mg daily.
Taking vit D increases your absorption of calcium from food, and the K2 makes sure it goes into the bones and teeth and doesn't build up in the soft tissues and arteries.
There are two types of vit K2: MK4 and MK7. MK4 is synthetic and doesn't stay in the body as long as MK7, which is natural.
I wish I could stop the dieting but I think it's ingrained in me now and I'm too worried to stop!
Worried about what? It's not what you eat that is making you put on weight, it's the low metabolism that goes with being hypo. Besides, the weight is unlikely to be fat, more like water-retention, and a low-calories diet is not going to make you lose that. And, on the other hand, you need calories to convert T4 to T3, so if you don't get enough calories, your FT3 level will go further and further down, making you more and more hypo, and therefore putting on more and more weight. Start eating more and it might have the opposite effect to what you think, and you could start losing weight.
Thank you for such an in depth reply, I've made notes of everything (my brain currently doesn't like to retain any information at all) and I will get the vitamins ASAP. Should I start taking them straight away, or get the above tests done first?
If you mean vit D, magnesium and vit K2-MK7, you should start them right away. as you've already had your vit D tested. But, do check in a new post, how much vit D you should be taking. You'll probably find you can buy vit D that already has K2 added to it, in the right proportions. For the magnesium, you can take up to 400 mg a day.
Testing magnesium is not helpful so don't bother with that. It's water soluble, anyway, so if your kidneys are working correctly, any excess will just be excreted.
For ferritin, folate and B12, you need to get them tested before taking any.
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