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Confused with TSH result rising

Macarthy profile image
Macarthy
β€’30 Replies

Hello again,

I had a GP phone call today to tell me my TSH has risen despite having been on an increased dose of Levothyroxine.

GP immediately questions me: "Are you taking the Levothyroxine?"

Me (narked): "Er, yes - 6am every morning, nothing to eat or drink until 7.30-8 am"

GP: "Hmm"

Me (still narked): "So, what is my TSH, then?"

GP: "It's 9.1"

Me: "Well, that's odd it's gone up, yet I've been taking 50 mcg for the last 8 weeks? ... It was 7.2 on 25mcg?"

GP: Complete silence

Me: "Hello?"

GP: "Hmm, yes, you really should be taking statins-"

Me: (sigh) "I've already had this conversation - I'm not going to take statins"

GP: "I've written you a prescription for 75mcg Levothyroxine ... take that and we will retest in 3 months time-"

Me: "Eight weeks"

GP: "Sorry?"

Me: " It's eight weeks testing with a rise in the thyroxine treatment, not 3 months. I will book a blood test in eight weeks"

GP: "Oh, yes, yes, eight weeks ... then we'll see what the numbers are, and if nothing changes we'll have to consider statins"

Me: "I'm not taking statins"

GP: "Like I said, I'll send a prescription over to the nominated pharmacy, and we will retest in eight weeks. Thank you. Goodbye."

(There was actually a lot more to this conversation but I won't go on)

My TSH levels were almost 11 when they put me on 25mcg Levo. They dropped to 7.2 after 8 weeks on the Levo at that dose. Then I was given 50mcg, and now, 8 weeks later, despite a rise in Levo, my TSH has risen - and now I'm being eyed suspiciously by a total stranger in relation to my tablet-taking compliance! πŸ˜†

What's going on? I am baffled. My TSH should have dropped in numbers, not gone up, surely? I am confused, with no approachable attitude from the GP (never spoken to the same one twice in a year) and no ideas forthcoming from either - just silence on the end of the phone.

Anyone experienced their TSH level going in the wrong direction despite a rise in Levo? Or am I just being a wuss?

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Macarthy
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greygoose profile image
greygoose

I'm curious as to why he thinks that your TSH has risen because you're not taking statins. Or maybe I've got the wrong end of the stick. lol But, cholesterol is high because your FT3 is obviously low. Nothing to do with statins or TSH. But, I suppose he wouldn't know that...

First question: do you have Hashi's?

Second question: were both blood draws early in the morning when the TSH is at its highest (another thing I wouldn't expect him to know about).

Third question: is TSH all they tested?

These things really aren't as simple as doctors make out.

Macarthy profile image
Macarthy in reply to greygoose

Hi there - he did mention my cholesterol is a little high (I do eat a lot of nuts - possible added cause?) but they have been trying to get me to take statins since I was first diagnosed, it's almost like bullying.

Reasons I won't take statins: Got multiple allergies. Last drug (antibiotic) I was prescribed resulted in an allergic reaction. Very wary of any new medicine. Plus, learned on here, statins not good for hypothyroid states - and just read on the NHS site not to take statins if thyroid is hypo!

I have no clue if I have Hashi's or not - I don't think I've been checked for it.

Only the last blood draw (I've had 3 over the last several months) was taken early morning - after I learned on here that early is best! ... My previous 2 blood draws were both in the afternoon. First was 10.9, second was 7.2. Now, this one, taken at 8.10am, was 9.1

They tested me full blood count. HbA1C.

So, am I right in thinking that perhaps my TSH was not quite accurate the last time because it was afternoon blood draw?

Thank you for such a quick response! :)

greygoose profile image
greygoose in reply to Macarthy

You are perfectly right to refuse statins, I'm not questioning that decision! I wouldn't take them myself.

High cholesterol has nothing to do with diet. It is made in the liver - because the body needs it - and the liver tries to keep the level constant. So, the more you consume, the less it makes. The less you consume, the more it makes. However, when T3 is low, the body cannot process cholesterol correctly, and it tends to build up in the blood.

Obviously your T3 is going to be low with a TSH that high. So, what you need is not statins, but more thyroid hormone, which will not only bring your TSH down, but also your cholesterol.

However, the way you wrote the story above - or maybe the way the doctor said it - it sounds like the doctor thought that you TSH was high because you weren't taking statins. And, that's what I found funny, not the fact that you weren't taking statins! :)

Anyway, if your blood tests weren't all done at the same time of day, you can't compare them, because you have no idea what is your TSH rising, and what is due to the circadium rythme of TSH. TSH is highest around midnight, reduces slowly through the early morning, then steeply after 9 am until it's at its lowest point around midday. Then, it starts to rise again. So, we always recommend having the blood draw before 9 am.

They tested me full blood count. HbA1C.

No, I meant any other thyroid tests: FT4? FT3? Antibodies? Nutrients? Just testing TSH is totally inadequate because the TSH is a very bad indicator of thyroid status. Although, when it's as high as yours, you are obviously under-medicated. The high cholesterol level is backing that up. So, you do need an increase in dose. :)

Macarthy profile image
Macarthy in reply to greygoose

I'm picking my blood test copy sheet up on Wednesday (earliest I can) so I will know exactly what all the other tests are, then.

I don't think I have ever had my FT3 tested. Just looked at my last printout of blood test results - no T3 in sight, just TSH level and Serum free T4 level.

The serum free T4 level was 13.9 pmol/L - that means nothing to me, I don't understand these numbers.

My last serum cholesterol level has an exclamation mark next to it and is at 7.4 mmol/L

I should add, that I was also diagnosed with diabetes 2 last August, and the statins may be constantly suggested to me because of that. From what I've read.

I'm more interested in getting my thyroid sorted, first, though GP doesn't seem to like that.

Yes, GP was questioning my truthfulness in taking the Levothyroxine! πŸ™„

No vitamins tested. Calcium, potassium, triglycerides, cholesterol (HDL & non HDL), sodium, urea, creatinine, neutrophil count, lymphocyte count, monocyte count, red blood cell count, white cell count, etc., tested.

I think it's time I sent off for private testing. Not sure which to go for, though.

greygoose profile image
greygoose in reply to Macarthy

The serum free T4 level was 13.9 pmol/L - that means nothing to me, I don't understand these numbers.

Means nothing to me either, without the range. Ranges vary from lab to lab, so we always need you to give the range that came with your result. :)

I didn't know statins had anything to do with diabetes. I can't see how. Although, these days, they make all sorts of claims for statins in order to get more people to take them. But, they're still a very bad idea - especially if you're hypo. Hypo people taking statins have a greater risk of muscle damage. They don't do anything for women, anyway. Your doctor should know that!

Get your thyroid sorted and your cholesterol will take care of itself. So, you've got your priorities right.

Private testing sounds like a very good idea. You need a bundle that gives you:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

:)

Macarthy profile image
Macarthy in reply to greygoose

Apologies 🀣 should have included it states next to my Serum free T4 level of 13.9 pmol/L a figure (I assume the range) of 11.00 - 22.00 pmol/L. So that looks like I'm on the low end of those figures?

Yes, I was surprised at how statins are prescribed frequently in diabetes treatment, too. Again, to do with cholesterol - and future complications associated with diabetes, is my understanding. But, every time I have a phone call from a GP in relation to a review, they always come straight in with:

"You really should be on statins"

I just don't get the statins push. It's making me dread GP phone calls, now, because I have to politely refuse to take statins each time. It's like a polite row, time and again🀣.

I'm with you on getting the thyroid sorted and let's see what the cholesterol does - I did say to the GP, the thyroid affects insulin resistance and cholesterol does it not? To which I was met with another bout of silence.

That's why I came here!

Thank you so much for the informative heads up on cholesterol and the liver - great info - and for the above needs for testing. Much appreciated.

greygoose profile image
greygoose in reply to Macarthy

You're welcome. :)

Yes, your FT4 is very low, so your FT3 is going to be even lower. And, that's why your TSH is high.

The problem is, doctors really know nothing about cholesterol. Try telling your doctor that your cell walls, sex hormone and your brain are all made from cholesterol. Reduce the level and they all suffer. Doctors get their cholesterol information from Big Pharma sales reps, who obviously want to sell more statins - and my understanding is that the practice gets financial incentives to push statins, even on those that don't need them. My friend was put on statins even though his cholesterol wasn't high - 'just in case' the doctor said. I managed to get him off them once, but the doctor bullied him into taking them again. Result was, he developped diabetes - no, statins do not help diabetes in any way, they cause it! - followed by prostate cancer. He now regrets not listening to me! But, statins lower progesteron and testosterone levels which protect against prostate and breast cancer. So...

And, high cholesterol is not the threat that they tell you it is. It does not cause heart attacks or strokes. And, it's even said that those with higher cholesterol live longer. :)

Macarthy profile image
Macarthy in reply to greygoose

Thank you, greygoose! Sorry for late reply - unexpected visitors, fell off the radar for a few hours! - I had heard, about financial incentives before, so that would not surprise me if that is the case. Seems odd how each one keeps telling I really should be on statins time and again, even though I say no thanks. I told the GP, as I've repeatedly said to the others (in one ear out the other it seems) that I'm not anti-prescriptions or the like, I'm just very wary about taking new drugs and purely because of how my system reacts. It's past experience and known allergies I have, that influence me ... and good advice from folks who know what it's like, as on here ... but, they keep on saying the same thing at every phone call, and I am starting to feel almost bullied myself.

I reduced my HbA1c by 30 points (healthful eating & exercise) without any medication (for the diabetes) since my last A1C test - and they just ignore that, it seems. I now dread the next phone call because I wonder if I have to have the same wrangle all over again!

You cheered me up, greygoose, when I read your closing sentence 😊

greygoose profile image
greygoose in reply to Macarthy

Glad to hear it! :) High cholesterol really is nothing to fear. Myself, I'm more at danger because my cholesterol is naturally low, so when I increase my T3 it goes too low, which puts me at higher risk of a heart-attack than someone with high cholesterol. But, instead of trying to find out why I have low cholesterol, all I hear from doctors is that cholesterol can't be too low!!! Which just goes to show how much they know about it!

Macarthy profile image
Macarthy in reply to greygoose

I hope you'll stay cholesterol-stable, greygoose! ☺

greygoose profile image
greygoose in reply to Macarthy

Thank you. :)

nellie237 profile image
nellie237 in reply to greygoose

The things statins have to do with diabetes are:

Diabetics are much more prone to heart problems, so just another reason to prescribe.

Statins result in higher blood sugar levels (approx 30% of people, expecially women will develop Type 2 due to statins). Some months ago, I decided I should have a good look at all sides of the statin debate and I watched a BHF video where Prof Rory Collins brushed over this by shrugging his shoulders and saying "Well, at least they are already on Statins". You couldn't make it up.

greygoose profile image
greygoose in reply to nellie237

They are all evil.

Macarthy profile image
Macarthy in reply to greygoose

🀣 - made me laugh!

greygoose profile image
greygoose in reply to Macarthy

:D

Macarthy profile image
Macarthy in reply to nellie237

Hello there, nellie237, yes, I read about the satins/higher blood glucose the other day...and thought 'oh, no, wrong direction' ... I had a bit of a polite rant with the GP earlier, and pointed out to him that I am starting to see symptoms I had before now disappearing and the last thing I want is to introduce any drug that has unpleasant side effects or may harm me and set me backwards - can't afford time off being ill either! - and want to concentrate on getting my thyroid into a better place. He didn't react or respond. I then added I knew the thyroid can cause insulin resistance, and asked: "Is that right?" He quietly replied: "Mm" So, I presume that was a yes.

I'm on a rant day, I think - just wish GPs would stop treating every patient as if one-size-fits-all.

nellie237 profile image
nellie237 in reply to Macarthy

Well, when you get to the stage where you are refused an increase in Levo because you are 'in range' you can remind this GP that he clearly doesn't follow guidance on ranges otherwise he shouldn't have offered statins until considered euthyroid, and ask him to explain. I'm kidding.......it's not worth the hassle. I've bit my tongue quite a few times when talking to my GP 'cos otherwise he's going to start being obstructive.

Just re-read your original post. I'm not surprised you were 'narked' . It'll probably be an offer of anti-depressants along with another push for statins in 8 weeks time. ie Subdue the patients, so that they become easier to manage.

Macarthy profile image
Macarthy in reply to nellie237

I am going to print off some of the info in the links SlowDragon gave me and wave them at 'em I'm also going to print off the NHS site where they state not to prescribe statins to hypothyroid patients ... can hardly believe it, my confidence in GPs is hovering above floor level right now. My husband says I should put a written complaint to the Practice Manager. I said I'll give it one more try, and if the next GP who reviews me treats me like a schoolkid handing in rubbish homework, then I'm going take the gloves off 🀣

Know just what you mean about the hassle - I'm wary of being labelled a difficult patient or something, but I don't feel they take much notice of us as individuals, now.

I really am expecting round 7 of: "You should be on statins", nellie237, in 8 weeks time! Am gearing up for it! 🀣

Artless profile image
Artless in reply to greygoose

I had no idea that my high cholesterol was because of incorrect medication. I have been trying for a couple of years to bring my cholesterol down but have just admitted defeat and taken the statins. I am only taking them three times a week due to reading about the damage they can cause but now am concerned that I should have gone with my first instincts.

greygoose profile image
greygoose in reply to Artless

I think you should have, yes. What's more, your doctor should know that statins are not recommended for hypos or women. The don't do anything for women, and if you're hypo, you're more at risk of muscle damage from statins.

Macarthy profile image
Macarthy in reply to Artless

Just to mention, Artless, my husband has been on statins for 5 years now following a heart attack. He used to be a smoker. Consultant blamed the heart attack on his years of smoking. His blood pressure and cholesterol are fine, but he has a lot of pains in his muscles and his liver results are off now and then. Apart from that, he seems fine. I guess it depends on why statins are prescribed. For me, with hypothyroid levels, I am not comfortable with the idea of them at all.

SlowDragon profile image
SlowDragonAdministrator

50mcg levothyroxine is only the standard STARTER dose levothyroxine

Dose levothyroxine is increased slowly upwards in 25mcg steps until TSH is around or under one

Most people when adequately treated will be on approx 1.6mcg levothyroxine per kilo per day

Unless extremely petite likely to need further increase in levothyroxine after next test

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 ΞΌg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 ΞΌg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a β€˜normal’ TSH and having thyroxine replacement in the range 75-150 ΞΌg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

You need vitamin D, folate, ferritin and B12 and thyroid antibodies tested if not tested yet

Email/Print this out and send it to GP

nhs.uk/conditions/statins/c...

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.

SlowDragon profile image
SlowDragonAdministrator

How old are you If under 60 years old should have been started on at least 50mcg levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

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.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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 on here that all thyroid blood tests early morning, ideally before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

Β£29 (via NHS private service ) and 10% off down to Β£26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test Β£29 via

vitamindtest.org.uk

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Macarthy profile image
Macarthy

Hi there, SlowDragon, I'm 58 and I weigh just over 11stone now. I was 11 stone 6lbs when I had my first full review where they weighed me and took my height etc., and now it states on my blood worksheet printouts that I am a body mass index of 27.97 and am overweight.

So in lbs I am now around 156 lbs ( around 70/71 kg?)

Yes, I did mention to the GP that I understood I was still on a starter dose, but everything I said was met with silence or ignored, except when I said I needed to have an 8-week blood test, not a 3-month. He gave me no clues on anything. Just kept bringing the conversation (I was having with myself, mostly) back around to satins.

Thank you so much for the links! And yes! I am going to print off and produce the info for my next review - feeling pretty fed up with GPs not listening to me or understanding my concerns.

Don't have any signs of a goitre, that I am aware of, but that's very interesting info regarding another autoimmune thyroid disease (Ord) other than Hashi's - I didn't know about that! Given that I have had allergies since I was a small child, you'd think the GPs would consider testing me for Hashi's - closest I got was a female GP saying to me over the phone: "Your issue may be genetic"

I think I have little choice here but to go for the private testing.

Thanks for the info - much appreciated!

helvella profile image
helvellaAdministratorThyroid UK

If your prescription is written for 75 microgram Levothyroxine tablets, they will be Teva. (The only actually available tablet of that dosage.)

If so, is that a change from what you have been taking?

Some members feel not so well on Teva product. While others find it excellent. There is no known way of telling in advance whether you will do well on it - or not.

Simply knowing of this possibility should help you recognise if it happens.

Macarthy profile image
Macarthy in reply to helvella

...it's Teva, alright! My eldest son and grandkids dropped in when I was online earlier, and when I told him about what happened during my phone call review, he went to the surgery, had a moan about how they've been treating me, got my bloodwork print out and then picked up my new prescription ... Teva! So now I'm a bit worried, but I'll take them.

Here's my breakdown:

Started on 25 micro Levo by WOCKHARDT - OK on them, but had ectopic beat episodes & weird headaches. Came on here to ask about it. Ectopics and headaches cleared up. No further issue.

8 weeks later, am on 50 micro of Levo, this time with the brand accord. No issues over the 8 weeks - except my TSH level has risen!

Tomorrow, I start on 75 micro Levo with Teva brand ... I'm hoping I'll manage OK! πŸ™„πŸ™

helvella profile image
helvellaAdministratorThyroid UK in reply to Macarthy

If you still have some 25 and/or 50, maybe as well to switch asap. That way, if you did have an issue, you could revert to the Wockhardt/Accord.

Hopefully you'll really well on them.

Macarthy profile image
Macarthy in reply to helvella

Thank you, helvella ... I've only got 4 tablets of the 50 micro (accord) left, but I've got 23 of the 25 micro (WOCKHARDT) left over. Good idea! πŸ˜€

serenfach profile image
serenfach

Statins seem to be the answer for all ills according to my GP. Athletes foot - statins, cut finger-statins etc. The number of times I have refused you would think they would note it down but no. When I realised they are trying to make money out of me and never mind the repercussions, I lost all faith. Medicine used to be an honorable job.

Your body is telling you that you need an increase, and possibly more than one over time. I hope you find your "sweet spot" soon.

Macarthy profile image
Macarthy in reply to serenfach

Hello there serenfach, and thank you :) It makes a difference to me to know that others are experiencing the same as I am - I find myself questioning myself each time they push for me to take statins, 'is it me?' kind of thing, and I feel the same way as you do. Appreciate your response :)

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