Hello: this is the first time I have posted on the forum, although I have been following it for a couple of years. I really hope someone will be able to offer me advice. I need to see back to my GP again and the more info I’m armed with, the better.
I was diagnosed hypo about 12 years ago after suffering chronic fatigue and other debilitating effects for so long that I'd had to give up work. Over a period of time, my Levo dosage eventually levelled off at 100 ug; I gradually began to feel human again and I lost masses of weight. My (then) GP decided I was losing too much and dropped my dose to 75 ug, despite much protestation; then promptly retired. Within about 6 weeks I was feeling awful again, so I saw one of the partners and she upped my dose to 100 ug again. There it stayed until 2017, when my current GP decided it needed to drop to 75 again – on the basis that my levels were within the reference range and I could run the risk of osteoporosis. After a month or two I started to feel rough again and the weight started to creep up. I asked for a higher Levo dose and a T3 test but she said no – the lab won’t test for T3 – and anyway, thyroid medication has nothing to do with weight control.
I intended to have a test done privately, but then I got rather poorly and ended up in hospital with acute renal failure, due to an infection caused by an unnamed virus. The hospital put me on Vit D.
Scans and MRIs then revealed a tumour in my left lung so I had to have it removed in March of last year. Anyway, all that aside, I eventually got round to having the private test and opted for the Blue Horizon Plus 15, based on the fact that my health has been in a bit of a mess for a while, so I might as well go the whole hog. The bloods were done at 9.30 in the morning, fasting, and I had not taken my meds. These are the results:
HbA1c IFCC: 33 (20-42 mmol/mol)
hs-CRP: 2.19 (<5.0 mg/L)
Ferritin: 171 (13-150 ug/L)
Magnesium: 0.96 (0.66-0.99 mmol/L)
Insulin: 120 (<173 mmol/L fasting)
TSH: 1.64 (0.27-4.20 mlU/L)
T4 Total: 77.7 (66-181 nmol/L)
FT4:16.20 (12-22 pmol/L)
FT3:4.18 (3.1-6.8 pmol/L)
RT3:21.0 (10-24 ng/dL)
RT3 ratio: 12.96 (Borderline 12-15)
TPOAbs: <9 (<34 kIU/L)
TgAbs: 10 (<115 kU/L)
Vit D 25OH: 74 (>30 - <175 nmol/L)
Vit B12: 177 (Insufficient 145-300 pmol/L)
S Folate: 37.6 (8.83-60.8 nmol/L)
My current daily medication is as follows:
Aspirin 75mg gastro tabs
Colecalciferol 800 iu
Fluvastatin 40 mg
Levo 75 mcg
I also suffer from regular bouts of debilitating IBS-D and take, as necessary:
Loperamide 2mg
Mebeverine (Colofac) 135mg
Ondansetron 4mg
I’m very unsteady on my feet and have had two bad falls in the past year, so I find exercise almost impossible and can’t walk very far these days (having fractured ‘things’ in both falls). Another problem, on a different note, was years of almost continuous mouth ulcers – but these have been slightly less frequent on changing to Fluvastatin – having worked my way through every other available type. I’ve put on loads of weigh in the past year, for no good reason and I can fall asleep anywhere, any time during the day but often have disturbed nights. My thermostat went on the blink years ago, so regardless of the time of year, I’m either freezing cold or flushed and blazing hot. My eyebrows have all but gone, my fingernails are very brittle and layer easily and the skin on my shins and feet is dry and flaky. I’m 67, by the way, and retired.
My apologies for being so long-winded but I know a lot of you very knowledgeable folk say you can’t give a comprehensive reply without all the facts. Many thanks for taking the time to read this.
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alf1151
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You are under-medicated. Your TSH is too high for someone on thyroid hormoner replacement - should come down to 1 or under. And, your FT4 and FT3 are both too low - should be at least over mid-range. Your FT3 is only 39.19% through the range. And that is why your cholesterol is high. You should not be taking a statin. They are not recommended for hypos or women. They could do you a lot of damage, whereas the cholesterol is innocuous.
Your vit d is on the low-side, but 800 iu vit D is not enough to raise it. That's only a maintenance dose.
Why are you taking daily aspirin?
Your unsteady gait is probably due to your low B12. Why aren't you supplementing that? It's so low that you should ask your doctor to test for Pernicious Anemia. Do that before you starting taking any B12.
Hello greygoose, thanks for your response. As SeasideSusie pointed out, I omitted to mention my gender: I'm female.
I’ve been on statins for nigh on 20 years, due to high cholesterol. This was before the hypothyroid diagnosis. I tried (on my then GP’s advice) to control it by diet for a year but it shot up to well over 8, so he prescribed the statin. The last cholesterol test was done on 19 December, at my annual review, as follows:
Serum cholesterol: 6.4 mmol/L; Serum HDL: 2.3 mmol/L; Serum non high dens. lipoprotein chol. level: 4.1 mmol/L; Ratio: 2.8.
The Vit D was prescribed in hospital (November 2017) at a dose of 800 iu in softgel form. On discharge from hospital I checked with my GP to ask if she was sure it was a high enough dose (I’d Googled articles that suggested it was way too low). She said it was fine and the recommended dose.
The Aspirin has also been prescribed for about 20 years (same time as the Statin). I had been referred to the Cardiac Unit for non-exertion chest pain. It was diagnosed as Prinzmetal’s and I’ve been on Aspirin ever since.
Having only discovered the B12 deficiency through the recent Blue Horizon test, I haven’t supplemented yet because I want my GP to test it.
What sort of medication should I be looking at to balance out the TSH/FT4/FT3? Despite my asking, my GP will only prescribe Levothyroxine and doesn’t want to listen when I try to say that, despite the guidelines, the dose she’s got me on isn’t right for me.
You don't suddenly become hypo when your doctor diagnoses it. You've been hypo for a long time by the time it gets bad enough for a doctor to take notice. Having high cholesterol for 20 years suggests you've had low FT3 for 20 years.
Diet has little to do with cholesterol. It's made in the liver, and the more you ingest, the less your liver makes. The less you ingest, the more the liver makes. Your cholesterol is not high because your liver is making too much, but because when your T3 is low, the body cannot process cholesterol correctly, so it mounts up in the blood. You still only have the amount of cholesterol the body needs, but it's not getting to the areas that need it.
Your doctor said that your dose of vit D was 'fine' because doctors know nothing about nutrition and have no idea how much vit D you should be taking when you're deficient.
It's been proved that taking daily aspirin does not prevent heart attacks but can cause other problems. It's really not a good idea.
You appear, actually, to be doing quite well on levo. It's just that your dose is too low. You need an increase of 25 mcg, then an retest in six weeks, and probably another increase of 25 mcg. But, how you convince your GP of that, I don't know. She doesn't seem to know very much about anything.
Convincing my GP will be very difficult indeed. I might well take the private route but will give it some serious thought first. Having spent so much on Blue Horizon and Smart Blood, it's probably the sensible thing to do, although I resent the fact that the NHS is so reluctant to actually help people!
A couple of questions, if you don't mind: Do you think I would benefit from some form of T3/NDT, or might an increase in Levo be suffient? Also, if my GP is worried about the osteoporotic symptoms caused by an increase, surely measures can be taken, med-wise, to counteract it? Thanks again.
Are you male or female? The ferritin range makes me think you are female (it goes a lot higher for males).
HbA1c IFCC: 33 (20-42 mmol/mol)
This is fine.
hs-CRP: 2.19 (<5.0 mg/L)
This is OK.
Ferritin: 171 (13-150 ug/L)
If you are female this is on the high side. However, ferritin can be raised due to infection or inflammation
Magnesium: 0.96 (0.66-0.99 mmol/L)
Magnesium is an unreliable test; however you are within range.
Insulin: 120 (<173 mmol/L fasting)
This looks OK (although not my area of expertise)
TSH: 1.64 (0.27-4.20 mlU/L)
This is a little high. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.
T4 Total: 77.7 (66-181 nmol/L)
This measures both bound and unbound (free) T4 so is not the most useful test but it is very low.
FT4:16.20 (12-22 pmol/L)
Low at 42% through range.
FT3:4.18 (3.1-6.8 pmol/L)
Low at 29.19% through range.
Your TSh is not quite low enough for us to see whether you convert T4 to T3 well enough. TSH needs to be down to 1 or below which gives the highest FT4 so we can then compare it with FT3.
RT3:21.0 (10-24 ng/dL)
RT3 ratio: 12.96 (Borderline 12-15)
Not worth the bother of testing. This test can tell us if we have high rT3 but it can't tell us the reason and there are very many reasons for high rT3 that are not connected with the thyroid.
TPOAbs: <9 (<34 kIU/L)
TgAbs: 10 (<115 kU/L)
These results are low in range and do not currently indicate autoimmune thyroid disease (Hashimoto's) as the cause of your hypothyroidism. However, one negative result doesn't discount Hashi's, you'd need several negative results for that because with Hashi's the antibody levels fluctuate.
Vit D 25OH: 74 (>30 - <175 nmol/L) - 29.6ng/ml
The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml).
Why are you only taking 800iu D3? Is this prescribed?
What form of D3 are you taking - softgel, tablet, capsule, oral spray?
To reach the recommended level from your current level, based on the Vit D Council's suggestions you could supplement with 3,700iu D3 daily (nearest is 4,000iu)
When you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.
You should be tested for B12 deficiency/pernicious anaemia. Many people with Serum B12 in the 300s have needed to be started on B12 injections.
Come back and tell us what is happening about this.
S Folate: 37.6 (8.83-60.8 nmol/L)
This is OK, it's recommended to be at least half way through it's range
My current daily medication is as follows:
Aspirin 75mg gastro tabs
Colecalciferol 800 iu
Fluvastatin 40 mg
Levo 75 mcg
I also suffer from regular bouts of debilitating IBS-D and take, as necessary:
Loperamide 2mg
Mebeverine (Colofac) 135mg
Ondansetron 4mg
Do you take your Levo well away from any of your other medications, at least 2 hours, some may require longer.
Have you checked for any interactions between Levo and any of your other medications, and any interactios between any of the other medications themselves? Google, it will take a while but you need to know of any interactions, time gaps, etc.
Why Fluvostatin? Are you female? Statins apparently not recommended for females - greygoose knows a fair bit about this I believe.
Also, statins and hypothyroidism not necessarily good bedfellows.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
SeasideSusie, many thanks for your reply. I’m female by the way.
You asked about the Vit D and why I’m only taking 800 iu. It’s because that was the dose prescribed in hospital in November 2017, and when I asked my GP if she was sure it’s high enough, she said it’s fine. They’re softgel, by the way. I’ve obviously been making a mistake in taking it at the same time as the Levo. In hospital, they gave me both together first thing in the morning – so I have continued to do the same. I take them as soon as I wake up but it’s only about an hour before I have coffee or anything to eat.
I have never seriously taken magnesium – only in shop-bought multi-vits, but I haven’t taken any of those for years. I’ve never taken K2 that I know of.
I don’t have milk in anything either, although I have Skyr/Kvark/cheese several times a week.
I have been on Statins for about 20 years, together with the Aspirin, for raised cholesterol and non-specific chest pain, which was diagnosed as Prinzmetal Angina. Both of these long before I was diagnosed hypothyroid.
I was very interested to read your comment about muscle weakness and statins. My leg muscles are so pathetically feeble that I can hardly walk anywhere anymore. I can get about on the flat and I’m not too bad on a gentle downward slope but give me an upward incline of any gradient, or a few steep steps, and I’m totally useless… I also get a lot of night cramps in both legs: from the big toes to the inner thighs and anywhere else in between. Sometimes it’s so debilitating it’s exhausting.
You also mentioned the ferritin level being quite high at 171. It was double that at one point, so it’s gradually coming down.
You’ve given me a lot of links to follow up, so I guess I’m going to do quite a bit of reading before I get my act together! Thanks for all your help.
Lipophilic statins (don't know if yours is one) can block certain cancer pathways, but they are not recommended for hypo and cause fails because they make your muscles weak. Vitamin D is too low and you are not taking enough to raise it. B12 is also too low (you need to supplement with methylcobalamin) Low dose aspirin can also block certain cancer pathways, but may upset your stomach and cause internal bleeding. Looks as though you need a levo dose increase. The high ferritin is probably the result of inflammation from tumour and surgery, but I'd want my GP to take a look at it
Thanks for the advice. I definitely need to do something fairly radical about the vitimin deficiencies. As far as the ferritin is concerned, I hadn't given much thought to the aftermath of surgery but you're probably right. Having a lung removed is pretty major, I guess, and I'm still suffering from random nerve-ending pain and very sore ribs which had to be broken - even though that was almost 17 months ago. I'll go back to my GP.
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