Although I have had hypothyroidism for 20+ years plus many other health problems. I have always just believed everything my doctors told me and I was either told my results were normal and everything was ok or not normal and I needed medication. I have never been given my actual results before. Since reading this forum, which I joined recently, I have realised I should know my actual results so asked for them from my last blood test.
These are some of my recent blood test results. My GP tells me my thyroid levels are perfect, what do you think about them? Are they perfect? I am on 100mcg/125mcg alternate days Levothyroxine.
Serum TSH: 2.5 (range 0.27-4.20). (Normal)
Serum Ferritin: 125 (range 12-150). (Normal)
B12: 751 (range 145-569). (High)
Folate.: 15.8 (range 8.8-60.8). (Normal)
Sodium: 129 (range 133-146) (Normal for Patient)
Potassium: 4.4 (range 3.5-5.3) (Normal)
Serum Cholesterol: 8.2 (no range) (high - speak to GP)
The blood test was done early morning and before I had taken my levothyroxine for the day.
I have been on 200mg ferrous sulphate alternate days and 100mcg Cyanocobalamin (B12) every day, both prescribed by the Doctor and have been on them for several years although she wants me to try coming off them. She said to reduce the dose to once a week for both of them until my tablets have gone.
I take Calcium supplements, Fultium D3 (prescribed), Vitamin C and Zinc and Omega 3.
My GP has just prescribed me Rosuvastatin for Cholesterol. I am also on several other prescribed medications for various health issues.
I always make sure I leave 4 hours between my levothyroxine and any other medication or supplement.
From your personal experience does my TSH result look normal/optimal for someone taking Levothyroxine?
I have many symptoms but it is possible they are all due to my other health conditions.
I can’t really afford to have private blood tests done especially not regularly but would it be worth saving up and just having just 1 done to check exactly what is happening with my thyroid? What advantage would this give me? Would my GP see the results? I can’t afford to see a private Endocrinologist and currently don’t even see one on the NHS. I haven’t seen one for thyroid since I was originally diagnosed with hypothyroidism approx 20+ years ago. My GP has managed my thyroid and medications since then.
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AlphaWolf5195
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The first things that jump out is your TSH is too high for someone on Levo, should be nearer to one so no your result isnt perfect and I'm guessing they just measured your TSH and no other thyroid hormones, like FT4 or FT3?
Just measuring TSH when already on Levo is completely inadequate, like trying to complete a jigsaw when you only have 1 of the pieces. Looking at your results suggests an increase in Levo is called for.
The fact your cholesterol is high and they've prescribed statins ( please research these, they are not recommended for hypos or women, please think carefully before taking them) is more than likely due to the fact that your FT3, the active thyroid hormone is too low. But as they haven't tested it we can't know.
Well done for joining the forum and getting your results, if you've read many of the posts you'll see your experience of thyroid treatment on the NHS is sadly all too common. As long as our bloods are somewhere within the range they think its good enough.
We can't leave our management to GP's who often know just enough to be dangerous. We have to learn and advocate for ourselves. How do you feel on these results?
Many thanks for your reply. The only thyroid result I have was TSH so that must have been all they tested.
My GP put me on statins because I have a family history of high cholesterol, both my parents had it but I do not want to be on them if I don’t need to. I suffer from both ME/CFS and Fibromyalgia so I am in constant pain and I know statins can cause muscle pain which as I suffer from it anyway I certainly don’t want it getting worse.
I feel constantly ill, in pain and exhausted. I’m often cold as well, although when I mentioned that to my GP she said it was because I’m not active. I can only walk very short distances, I have to use a wheelchair for any further. I am housebound and when my ME/CFS flares up I am bed-bound as well. My GP tends to put all my symptoms down to ME/CFS.
Most feel well with TSH (thyroid stimulating hormone) around 1. It isn’t a thyroid hormone, it’s the signal the pituitary sends to make your thyroid increase or decrease production. It isn’t reliable its can appear normal and not correctly reflect thyroid levels.
As you doctor knows your levels are perfect they must be going by thyroid levels. The FT4 & FT3 levels. Do you have them? Most are well with FT4 in top third of range & FT3 at least 50 %.
Many thanks for your reply. I have the results from my blood tests and FT4 and FT3 levels don’t seem to have been tested, I certainly don’t have any results for them. The only result I have for thyroid is TSH so I am fairly sure that is all they tested otherwise I’d have the results so TSH must be the result that my GP says is perfect. Although I have had hypothyroidism for many years I have never looked into it, just gone along with what my GP said, so I don’t actually know much about it. I want to learn though in the hopes I may feel slightly better.
High cholesterol and TSH over 2 suggests you are not on high enough dose levothyroxine
Are you male or female
Approx age and weight in kilo
Just testing TSH is utterly useless
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
Is your hypothyroidism autoimmune
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Definitely get thyroid and vitamin levels tested
If GP wants you to try reducing vitamin levels she should test levels NOW before trying reducing
Many thanks for your reply, I am female, 54yrs and weight is approx 61.5 kilos.
I have no idea whether my hypothyroidism is autoimmune or not. I don’t remember anyone ever telling me. I have never had a scan of my thyroid done.
The blood tests I listed were from a couple of weeks ago and it was because of these results that my GP wants to take me off of ferrous sulphate and B12. I don’t know when my vitamin D was last tested but I have been on Vitamin D tablets (prescribed) for many years as I had a vitamin D deficiency.
I am starting to think I should save up and get a private blood test done. I know if I ask my GP she will just tell me I have only just had a blood test done and the results were good.
Do you have any recommendations of the best blood test to have? It would have to be somewhere that can send a nurse to my home to do the blood test as I am housebound.
If it is my thyroid that is causing my high cholesterol, I don’t really want to be on the cholesterol tablets if I don’t need to (although both my Parents had high cholesterol so it does run in my family).
I definitely have a family history of thyroid problems. My father had hypothyroidism, one is my sons has mild hypothyroidism and my other son had Graves Disease (hyperthyroidism) when he was approx 11yrs (he was on medication for several years before coming off it and at the present is ok). As far as I know my mother has never had thyroid issues.
Do you think it would be worth me having a private thyroid test to see whether it is autoimmune and also what my FT3 and FT4 levels are?
So according to your weight 100mcg is about right, but its a big but that's only a rough guide. And there are many factors that can influence how well your body handles Levothyroxine. Vitamin and mineral levels, your digestive system, other medications can all affect how much you absorb, even the time of day you take it.
Do you take your Levo with water, away from tea and coffee. There's some evidence taking it at bedtime can improve absorbtion.
I am on Tegretol Prolonged Release (for seizures) which interacts with Levothyroxine and also several other medications. I always make sure I leave at lease 4 hours between my levothyroxine and all my other medications and take it with water. So although I always leave a minimum of 4 hours I’m not sure whether my other medications affect my thyroid levels.
I agree with all the other comments made about your less than adequate care, the bit that I would like to highlight is this....
Sodium: 129 (range 133-146) (Normal for Patient)
It really doesn't want to be below 135...
Why is this level normal for you?? It is the same level that my MIL got taken into hospital to investigate due to confusion and collapsing... low sodium makes you feel utterly awful and can be a killer!
You absolutely need to get a full thyroid test and confront your GP 🙃
My sodium levels are a long story. I have had low sodium for over 10 years possibly caused by my Tegretol prolonged release tablets. 129 is fairly good for me.
I was referred to an endocrinologist for low sodium but never saw him, I saw a different registrar each time I went and every one of them had different ideas. The first did more tests and said depending on results I would possibly have to go on sodium tablets (these were never mentioned again). The 2nd one I saw said my aldosterone wasn’t right so put me on Fludrocortisone (a corticosteroid). The 3rd one I saw doubled the dose of my Fludrocortisone as I also suffer from postural hypotension and said my body was used to the levels of sodium in it which were round about the 125-129 mark so that was now normal for me, she signed me off back to my GP (approx 8 years ago) who so long as my sodium levels are at that level doesn’t worry about it. I tend to put a lot of salt on my food in the hopes it will help my sodium levels.
I have in the past had pneumonia and been admitted to hospital as my sodium levels had dropped to 114 (I was seriously ill at this point), evidently having pneumonia causes it to drop. I am prone to getting pneumonia (and anything else going) as I also have neutropenia (low white blood cell count) so I have to be a bit careful.
Very low FT3 can cause pains everywhere and without a blood test for Ft4 and FT3 how do you know what's wrong with you it can also cause high cholesterol too.
I am definitely starting to think I need to get a private test done to check all my thyroid levels and also to find out whether it is autoimmune so I can have a clearer picture. The only thing that worries me is even with these results will anything change if it needs to? Will my GP adjust my medication accordingly or just say that she thinks my thyroid levels are fine as they are now and doesn't need any medication adjustment.
I know what I would do but only you can change things. It's constant battle but one worth trying. I wouldn't be anywhere today without this site learning new things and acting on them. When you have your results post them on here for answers that way you can be helped. Good Luck.
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