I've long had difficult and wide-ranging symptoms that seem to affect pretty much every aspect of my health and give me pain, "severe brain fog", muscle weakness, nerve pain, what seems to me to be hormonal or metabolic problems that all are getting too much to cope with now.
I'm pretty sure not all of it will be down to thyroid issues but some of it "feels" like it could be if that makes sense. I just know my body is not functioning well at all and knocking me for six every day.
I'm male and 69 years old. I've been ill for almost 10 years with different issues. But I still don't know what the real cause of my problems are.
I've had my thyroid levels checked occasionally and the doctors say they're OK. I've never been totally convinced. One reason for this is that my wife started to feel unusually tired some years ago, had her levels checked and was told she had hashimoto's. She's been on medication for that ever since but still has some odd issues that we put down to her hashimoto's. I often feel like she did when she started to feel off and, even now, we share some of the same symptoms. But I think I suffer more. I'm not saying it's all thyroid-related and perhaps I have other stuff going on too.
But, I often wonder why my usual thyroid levels, particularly TSH, are always higher than my wife's were when she had her diagnosis. Yet I'm told I'm OK. My last TSH level was 3,000. My wife's was around the same at the time of her diagnosis and she hovers around 1,000-1,500 now with medication. I know such things as T4, T3 and other levels are important but I still find it strange that my TSH doesn't sound any alarm bells. Is this because they are not expected to be the same in men as they are in women?
Another thyroid test showed that my PTH Parathormone intacte (I live in France and that's how it's written on the results sheet) are often elevated. The highest it's been is 108 pg/ml with the reference range between 19 and 88. Depending on where I've searched, this "could be" having a detrimental effect on my health to varying degrees. But doctors say not. I had a scintigraphy of my thyroid done and some of the remarks the were as follows. This is a Google translation of the French version so I apologise if it doesn't translate well.
"Thyroid gland in the cervical position, with a right lobe a little larger than the left. Homogeneous attachment to his gland, without argument for a cold or hot nodule.
Absence of clearly individualizable images that could suggest a pathological parathyroid in the cervical region or at the mediastinal level. In addition, small doubts about a delayed clearance of MIBI at the left middle thyroid level, compared to a recent thyroid and parathyroid ultrasound".
I have no idea if any of that is important.
I know if I have any replies I'll be asked about other test results and symptoms but I thought I'd just ask what people think about the points I've raised so far.
Many thanks in advance for any replies.
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frankaspergilus
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Yet I'm told I'm OK. My last TSH level was 3,000. My wife's was around the same at the time of her diagnosis and she hovers around 1,000-1,500 now with medication.
Are you using that comma as a decimal point, à la française? Because a TSH of three thousand is unthinkable, whereas a TSH of 3.000 (three) is far more likely.
A TSH result on its own tells you very little. The T4 libre and T3 libre are far more important. Even so, the three results should be concidered together, to get the full story.
Did you have your antibodies tested? That could be the difference between you and your wife. If you both have the same TSH level, but she has high antibodies, and you don't, she is far more likely to get treated than you are. Having Hashi's + raised TSH is proof positve of a thyroid problem. Just having a raised TSH - especially if it's only 3, could be due to a variety of things - I'm speaking from a doctors point of view, you understand, although I'm not a doctor myself. And, this is where the other two readings become important. So, if you have T4/3 results, can you post them, with their ranges, and let us have a look?
Yes, you're correct about the comma being used in France as opposed to the full stop. So my level of 3,000 would likely be 3.000. I'll try to remember that when quoting results in the future. I'm hoping any French terms I'm quoting are recognisable and easy for you to understand. If not, let me know.
I did have T4 libre tested and it was 11. 52 (ref range 8. 90 to 17. 60).
Anti-thyroglobuline <15 Ul/ml (ref range <60).
Anti-thyroperoxydase 40 Ul/ml (ref range <60).
Homocysteine 12.5 umol/l (ref range 5 - 12). So that was slightly high.
I don't know why free T3 wasn't done.
TSH was actually 3.222
Folates were 9. 1 ng/ml (ref range >5.4).
B12 was 308 pg/ml which I know is on the low side.
D3 wasn't done but it's usually around 36. I'd like it to be much higher but even with supplements and living where we have a lot of sun, it never seems to get any higher.
OK, so with a TSH of 3, you are technically hypo, but not likely to get a diagnosis at that level in France. It would have to be over-range. And, I think most TSH ranges in France are around 4.5.
Your FT4 is only 30.11% through the range, which again indicates hypo. But, for the majority of doctors it would have to be under-range to get a diagnosis.
They seem to be following the universal trend to avoid testing FT3, but it does depend on the doctor. With most doctors, I find you have to insist on it. Did you have your cholesterol tested? High cholesterol is an indication that the FT3 is low.
Your antibodies are negative at the moment, but that doesn't mean much. Antibodies fluctuate all the time, so on a subsequent test, they could be over-range. Difficult to say. But, you could ask for an unltrasound, because that would pick up any damage done by having Hashi's.
Homocysteine not high enough to be of any concern.
Your folate is too low, should be at least into the double figures. So, along with the lowish B12 indicates that some supplementation might be beneficial.
How much vit D have you been taking? Maybe the dose just wasn't high enough. Very doubtful you'd get enough from just being in the sun, even in the south of France. We have people from Australia on here, with low vit D.
Also, were you taking magnesium with your vit D? The two work together so need to be taken together. And, if taking vit D, you also need to take vit K2-MK7 because the vit D increases 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.
To think I may be hypo and possibly been so for a while without anyone even considering it is crazy. But what's new with the medical profession these days!
My total cholesterol is often elevated (2.5 g/l the last time and 2.8 g/l six months before that). The reference range is <2 g/l. But my doctor said he wasn't worried about that.
I've found an earlier test that did have T3 libre at 2.70 pg/ml but T4 wasn't done at the same time and TSH was 3.000.
I can get B12 ampules easily enough here but how would I supplement folate?
Here in France doctors supplement D3 with doses of 100,000 ul at a time which many people say is too much in one go. And they don't mention K2. I had the 100,000 dose about 3 months ago but I still take a small tablet with added K2 each day which I still think isn't enough. As I said, my D3 level stays around 36 no matter what.
I take magnesium gluconate in powder form but probably don't take it as regularly as I should.
I'm in the stage where I don't know what's making me feel so ill, yet don't seem to benefit from anything I take so therefore give up on trying things too easily/quickly. My fault alone but I seem to be going downhill pretty fast and I don't have the energy or brain power to maintain any self treatment.
You say ask for an ultrasound. I presume you mean of my thyroid?
Where would I find a really good endocrinologist, even online, who would help me with all this to the point where I can go to my own doctors with enough evidence, through thorough testing, that they would have no option but to take this more seriously? Would you know? My doctors never listen to me and won't do a thing to help. They just throw their arms up in the air.
And, if you had to make a list of things to test again what would they be bearing in mind my sex and age. In 2019 I had FSH and LH tested. FSH was 12.7 u/l with the ref range 1.6 - 12.4.
And is the "parathormone intacte" something that could be adding to something to all of this?
I really appreciate you taking the time to give your comments but don't feel I'm pushing for answers straight away. Reply as and when it's convenient.
To think I may be hypo and possibly been so for a while without anyone even considering it is crazy.
Crazy, but it happens all the time. I was hypo for nearly 50 years and no-one even thought to give me a test.
I've found an earlier test that did have T3 libre at 2.70 pg/ml but T4 wasn't done at the same time and TSH was 3.000.
Do you have a range for that? You must always give the ranges because they vary from lab to lab, and we need the range that went with your result.
My total cholesterol is often elevated (2.5 g/l the last time and 2.8 g/l six months before that). The reference range is <2 g/l. But my doctor said he wasn't worried about that.
I'm not worried about it, either. lol High cholesterol is not a disease, it's a symptom - usually a sign that your FT3 is low, and that is worrying. However, it's not infailable because some people just naturally have low cholesterol whatever. When I was diagnosed, my total cholesterol was only 0.1 above the range - didn't stop my doctor screaming at me, though, 'Madame, you are furring up your arteries'. Silly s*d.
I can get B12 ampules easily enough here but how would I supplement folate?
If you are having B12 injections, or taking B12 tablets, you must also take a B complex because all the Bs work together, and need to be kept balanced. Get a B complex on Amazon - Thorne Basic B complex - that contains methyl folate, and that will bring your folate level up nicely.
Here in France doctors supplement D3 with doses of 100,000 ul at a time which many people say is too much in one go. And they don't mention K2. I had the 100,000 dose about 3 months ago but I still take a small tablet with added K2 each day which I still think isn't enough. As I said, my D3 level stays around 36 no matter what.
Yes, I know. Absolutely stupid and not designed for people with deficiencies. Most people are low in vit D, it's true. And that might be too much (?) for someone with a normal constitution. But we are hypo, and need much, more more. What dose is your 'small tablet'? Why can't you just increase it?
You say ask for an ultrasound. I presume you mean of my thyroid?
Yup.
Where would I find a really good endocrinologist, even online
Difficult. But I do know one in Paris, if that's any good to you. Cost you an arm and a leg, though! He's not an endo, he's an Anti-Aging doctor, trained by Dr Thierry Hertogh, in Brussels. In fact, have a look around for an Anti-Aging doctor where you live. They know their hormones much more thoroughly than any endo!
And is the "parathormone intacte" something that could be adding to something to all of this?
No, despite it's name, the parathyroids have nothing to do with the thyroid. They get their name from their proximity to the thyroid.
And, if you had to make a list of things to test again what would they be bearing in mind my sex and age.
Not sure your sex and age has much to do with being hypo. I would just say more of the same - all of them:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
BUT, first of all, if I were you, I would get myself tested on a decent supplement programme:
* D3 with K2 and magnesium
* B12 with a B complex
And take them religiously every day. Not just when you think about it. It takes a long time to optimise nutrient levels, but taking thyroid hormone won't do you much good if they are sub-optimal.
Welcome to our forum and, for future posts, copy and paste the above into your Profile - you have your name in it at present. This enables members in future to read your history without you having to repeat it. Click on your name and it will take you to 'your page'.
If I couldn't get diagnosed - even when TSH was 100 - I don't trust doctors to have any knowledge at all. I even underwent an unnecessary operation due to a 'wrong diagnosis'.
Always get the earliest possible blood draw - even if made weeks ahead - and it is a fasting test but you can drink water. When diagnosed don't take thyroid hormones before test but afterwards. Take tablets with one glass of water.
Request B12, Vit D, iron, ferritin and folate to be tested as everything has to be optimal. If your doctor is reluctant (I don't see why he shoud be) you can have a home blood test from one of the recommended labs.
I'll update my profile shortly but as my problems are wide ranging and I think have other causes as well as some potentially being caused by thyroid issues, it could be quite a fairly big task. I've posted on other forums that concern other health issues that are also relevant to my state of health. So it would be probably be a lot for anyone to take in. I understand completely why you asked me to do that though.
I'm not being treated for thyroid issues because none of the doctors really listen to what I tell them and as long as my blood tests are "close enough" to normal they'll not look any further. You know how it is of course.
I've just added a post with a few more test results.
As I live in France, I'd have to check if any of the recommended labs are available to me or find labs that do the same thing here in France.
Don't worry - I have hypothyroidism and had to diagnose myself (you can click on my name which will take you to my history re being diagnosed and also have a rare condition that was only diagnosed a couple of months ago as I have multiple autoimmune conditions but I feel well and energetic because I have the right thyroid hormone for me. It was a struggle to get it restored but the new GP had no qualms about prescribing. I am very fortunate.
I think you have hyperparathyroidism—or at least this is a diagnosis you should purse/rule out. Symptoms overlap with hypo. Not being able to raise vitamin d is a red flag. You need vit d, calcium and parathyroid tested from the same blood draw.
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