Advice, I am so confused

[AlphaWolf5195]

Hi Everyone.

Sorry to bother you all again.

I had a blood test I didn’t know was happening a few days ago and spoke to my GP yesterday.

I have been suffering with a lot of headaches, lightheadedness, shortness of breath and insomnia lately. More than I usually do.

I had been on 75mcg Mon, Wed, Fri and 100mcg Tues, Thurs, Sat and Sun.

My GP has now reduced my dose to 75mcg every day, she said my symptoms were because I am over medicated. When I said I didn’t have them a few months ago when I was on a higher dose of Levothyroxine and my TSH was even lower and my FT4 was higher, she just said it was because it was a build up of being over medicated for months. Could this be the cause? My FT4 has never been out of range, only my TSH.

It just didn’t seem to make sense to me but I do tend to get confused with hypothyroidism, symptoms and levels and everything else to do with my health, (although this was also from the same GP who told me that only people with hyperthyroidism have antibodies, people with hypothyroidism don’t, so I told necessarily think she knows what she is taking about in regard to thyroid).

I always seem to get conflicting advice from different doctors, get fobbed off and none of them seem to answer my questions properly.

These are my most resent Thyroid results, unfortunately they didn’t do my FT3. I had been on 75mcg Mon, Wed, Fr and 100mcg Tuesday, Thurs, Sat, Sun when these were taken.

My last dose of Levothyroxine was approximately 12 hours before the blood test.

21st October 2024

TSH 0.09 (0.27-4.20)

FT4 19.6 (11.9-21.6)

24th October GP reduced Levothyroxine again to 75mcg a day.

My previous blood test results were

Jan 2024 on 100/125mcg alternate days

TSH 2.5 (0.27-4.20)

After this blood test I changed from taking my Levothyroxine in the morning to in the evening, which drastically changed my results.

June 2024

TSH 0.02 (0.27-4.20)

FT4 20.4 (11.9-21.6)

FT3 4.1 (3.1-6.8)

June 2024 Doctor reduced Levothyroxine to 100mcg daily

August 2024

TSH 0.03 (0.27-4.20)

FT4 17.1 (11.9-21.6)

August 2024 Doctor reduced Levothyroxine to 75mcg Mon, Wed, Fri and 100mcg Tues, Thurs, Sat and Sun.

Will be having another blood test in 3 months which I’ll will try to get them to do FT3 levels as well as FT4 and TSH if possible.

My GP has now reduced me to 75mcg but has put on my prescription that I’m to have Wockhardt 25mcg tablets and Accord 50mcg. In case it was the changing from Wockhardt to Teva that is causing the headaches.

A bit of further info, I do have chronic low sodium for over 10 years which can sometimes cause light headedness although when I get it I have a dioralyte to increase my sodium levels which has always worked in the past but isn’t working now, which makes me think the lightheadedness is caused by something else this time. Could it be thyroid related?

I also have low white blood cell count and low red blood cell count but have had both of these for over 18 months and have only recently had problems with the headaches, lightheadedness, shortness of breath and insomnia.

I am waiting for appointments with Haematology (for low blood counts) and Endocrinology (for low sodium).

Just wondered whether anyone had any thoughts on my current thyroid health, whether I am over medicated, under medicated or whether it could be causing my recent problems or any suggestions.

Sorry for the long post.

[greygoose]

You're right, your doctor hasn't a clue what she's doing! For one thing, she's dosing by the TSH, which is totally wrong.

21st October 2024

TSH 0.09 (0.27-4.20)

FT4 19.6 (11.9-21.6)

There was no need to reduce your levo there. But I expect she did it because your TSH is below range. Your FT4 is high-ish but that is because you are a poor converter:

June 2024

FT4 20.4 (11.9-21.6) 87.63%

FT3 4.1 (3.1-6.8) 27.03%

You can see from the percentages through the range that the FT4 is a lot higher than the FT3 - the FT3 should only be slightly lower. This means that you are not converting well at all, so your T4 is building up in the blood. You're not on a very high dose of levo, so it's not your dose causing the high FT4. Reducing the levo will also reduce the FT3, which will cause symptoms as T3 is the active hormone. So, your headaches etc probably are due to the reduced dose. But I don't suppose your GP knows anything about all that.

I do have chronic low sodium for over 10 years

Are you on a low-salt diet? If so, increase your salt intake and your sodium level should rise. I can't see that that has anything to do with endocrinology.

[AlphaWolf5195 in reply to greygoose]

Many thanks for your reply. What you say makes far more sense to me than what my GP says.

Is FT3 more important than FT4? Is there anything I can do to help convert FT4 to FT3? I will try to talk to the Endocrinologist about my thyroid when I see them about my sodium and hope they can help, although it might be a few months before I get to see them, I am on a waiting list.

My blood pressure is also fairly low, what that have anything to do with thyroid?

Endocrinology does in fact deal with low sodium, when I was hospitalised with severely low sodium, it was an endocrinologist who saw me in the hospital, I was also under endocrinology previously for my low sodium but haven’t seen them since 2016. The problem I had was I saw a different one each time and they all had conflicting advice. One wanted a few more tests then was going to put me on sodium tablets, the next one put me on Fludrocortisone (a corticosteroid) and the third one just said my levels had been low for a long time and my body was used to them being that low.

I add salt to all my food, I drink lucozade sport containing electrolytes and I also have dioralyte sometimes. One endocrinologist said it was probably my Tegretol tablets that caused the low sodium.

[greygoose in reply to AlphaWolf5195]

They're both important in their own way. T4 is basically a storage hormone that doesn't do much until it is converted into T3, the active hormone. But, if you're taking T4 - levo - you do need it tested to see if you're taking the right amount. Despite what doctors think, the TSH alone just cannot tell you that. You can have a low TSH and your FT4 still not be high enough for good health. And you need FT3 tested to see how well you are converting that T4 into T3. Doctors just don't understand that because they weren't told about it in med school. And anything they didn't learn about in med school doesn't exist in their reasoning.

It would be a good idea to try and talk to your endo about your poor conversion when you see him, but there's no guarantee he'll know any more than your GP. He only had the same education.

As for ways to improve your conversion, that's a tricky one. Because there are so many causes of poor conversion, and you might never find out what is causing yours. The first thing to do, of course, is to make sure all your nutrients are optimal: vit D, vit B12, folate, ferritin, iron, zinc, copper, selenium... If you have nutritional deficiencies it will affect your conversion. Secondly, make sure you're eating enough! No low-calorie diets! You need calories to convert. Then, maybe, check out cortisol.

Do you have Hashi's? Because Hashi's people are often poor converters, and there's nothing you can do about that!

Low blood pressure is a hypo symptom, yes.

I must confess, I know nothing about low sodium. It's usually people going on about eating too much salt - I don't hold with that. Salt is very important for the body. However, there is one possibility for your problem: low stomach acid. Most hypos have low stomach acid due to low T3. That makes digesting food and absorbing nutrients difficult, which is why so many hypos are deficient in a lot of nutrients. But I don't know if that would affect sodium absorption. Has anybody ever tested your stomach level? Or suggested it might be a problem?

[AlphaWolf5195 in reply to greygoose]

Thank you for your reply.

I asked my GP about testing iron and B12 as the last time I had them tested was in Jan 24 and that was only Ferritin (not full iron panel) and B12, and I have lowered my dosage of both of them from every other day to once a week (prescribed 200mg Ferrous Sulphate and 100mcg Cyanocobalmin -B12) in Jan but she just told me that my Full blood count although low was the same as usual for me therefore they didn’t need checking.

I have no idea whether I have Hashi’s, I asked my GP a while ago whether my antibodies have ever been tested and whether I had it but she just told me that antibodies are only checked for Hyperthyroidism as you didn’t have antibodies with hypothyroidism.

I’ve never had zinc, copper or selenium tested and my cortisol was last tested in 2015, I mentioned testing my cortisol to my GP during the last couple of years but she just told me as I was on Fludrocortisone (a corticosteroid) there was no point in testing my cortisol as the results would be wrong because of it.

Interesting what you say calories etc, when I have lack of sleep due to insomnia I don’t have the energy to eat properly (I have lost weight due to this) so maybe this is affecting my conversion? My GP has just prescribed me meal replacement drinks to have on days I don’t have the energy to eat so hopefully this will help.

I’m going to take notes of everything suggested and then ask the endo when I see them and also ask if they can do more blood tests. I want to be fully prepared. I really want to try to get my health sorted out as I feel so ill all the time.

If I get no luck with any of these I’ll have to try to save up to get a private blood test done (my financial situation isn’t great) but I’m trying to get it done through NHS if at all possible.

I really appreciate all your help

[greygoose in reply to AlphaWolf5195]

I have lowered my dosage of both of them from every other day to once a week (prescribed 200mg Ferrous Sulphate and 100mcg Cyanocobalmin -B12) in Jan but she just told me that my Full blood count although low was the same as usual for me therefore they didn’t need checking.

Well... for a start, cyanocobalamin is not going to do you much good.

- It's not well absorbed, at a cellular level, the body has to convert it to methylcobalamin, so you might just as well take the methyl form to begin with

- 100 mcg is a very low dose, not enough to sort out a deficiency, anyway

- and taking just one isolated B vit is not going to do much for you, either, as the Bs all work together and need to be kept balanced, so you'd be much better off taking a methylated B complex, with all the B vits in the methyl form

- also, if you reduce a small dose drastically the level is just going to drop again.

What were your latest levels? Do you have a print-out of your results? Don't just take your doctor's word for anything. It sounds like she's just making it all up as she goes along! Some doctors do that.

she just told me that antibodies are only checked for Hyperthyroidism as you didn’t have antibodies with hypothyroidism.

I am left speechless by her ignorance! Yes, she is making it up as she goes along, because I've heard most things - opinions - on this subject but this one is new to me!

It is essential to know if you have Hashi's because of the way the disease progresses. Very few doctors know and it causes them to make a lot of mistakes when treating Hashi's patients. And, yes, you do have antibodies with hypothyroidism. Hashi's has two types of antibodies: TPOab and TgAB. Both need testing.

Actually, to be fair, she could just be confused and not paying enough attention when it was expained to her - IF it was ever explained. Hashi's can swing between hypo and false 'hyper' periods, and antibodies tend to be highest during the 'hyper' phase. Perhaps she took that to mean that you only have them during the hyper phase. Antibodies fluctuate all the time, but can very easily be high in hypo patients.

I’ve never had zinc, copper or selenium tested

These are never tested as a matter of course, unfortunately (low zinc can cause a lot of nasty symptoms! I speak from experience, here). But they can be done. No doubt your GP will conjure up some far-fetched reason why they can't, but no harm in asking. Or, perhaps you could do them privately?

she just told me as I was on Fludrocortisone (a corticosteroid) there was no point in testing my cortisol as the results would be wrong because of it.

Well, that sounds plausible. Until you think about it. I'm not sure by how much the Fludro would increase the levels, but it's true that testing wouldn't tell you how much cortisol your adrenals are making. BUT, it would tell you how much cortisol you have in total in your system, and whether or not it's enough. (Got a hand it to this woman, she's brilliant at finding excuses not to test! lol)

My GP has just prescribed me meal replacement drinks to have on days I don’t have the energy to eat so hopefully this will help.

It may. Or it may not. Depends what's causing your poor conversion. It could be a combination of things, so just fixing one of them won't help much.

But have you considered that maybe not eating properly is not the cause of you're losing weight? Weight-loss can be a hypo symptom. So, as you're FT3 is probably low, that could be the cause.

[AlphaWolf5195 in reply to greygoose]

I was prescribed B12 injections every 3 months for years, as I was deficient in B12, then last year my GP changed me onto the Cyanocobalamin 100mcg tablets daily for the first 3 months, every other day the next 3 months, then once a week after that.

My Ferrous Sulphate I was originally prescribed 2 tablets every day because I was deficient and over the course of the last few years it’s been gradually reduced to one tablet once a week.

I haven’t had a blood test for B12 or Ferritin since they were both reduced to once a week in January.

I only have blood test results from Jan this year and onwards, I have tried to get previous years blood test and have got a few but no where near the amount of blood tests I have had done and not the ones I wanted.

My January results are below

Blood Test Jan 2024

Serum 25-HO vit D - 99 (no range)

Serum Ferritin - 120 (12-150)

Serum Folate - 18.3 (8.8-60.8)

Serum B12 - 623 (145-569)

[greygoose in reply to AlphaWolf5195]

OK. So, the thing you need to bear in mind is that doctors know nothing about nutrition. They just don't have any training in it.

And the certainly know nothing at all about the connection between hypo and nutritional deficiencies. So don't take your GP's word for anything of that kind!

As a hypo you need to test your nutrients regularly. Your B12 and ferritin were fine in January 2024 but they could have dropped a lot since then as you are taking enough of them.

And I'm willing to bet that your doctor didn't prescribe - or mention - taking vit C with your iron, and a full B complex with your B12 injections. Levels may seem fine in blood tests but without the co-factors the body can't do anything with it.

Just because your doctor prescribes something doesn't mean he knows anything about it.

[SlowDragon Administrator]

Just testing TSH and Ft4 is completely inadequate

Do you always get same brand Levo at each prescription

Test 8-10 weeks after any dose reduction

Last dose levothyroxine should be 24 hours before test

As you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

What vitamin supplements are you taking

When were vitamin D, folate, ferritin and B12 last tested

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)

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

[AlphaWolf5195 in reply to SlowDragon]

Thank you for your reply, I appreciate you help.

I have recently had my 25mcg tablets changed from Wockhardt to Teva, I had them for about a month but now have Wockhardt tablets again and I’m going to try to make sure I get Wockhardt prescribed every time in the future. My 50mcg and 100mcg have always been accord which I’m fine with.

I have got to fill in a form in 3 months time requesting a nurse to come out to do a blood test so will ask for FT3 to be done as well as FT4 and TSH and see whether they will do it, I’ll also ask for iron, B12, folate and vitamin d. as they haven’t been tested since Jan 2024 and my ferrous sulphate and b12 tablets were reduced from every other day to once a week after my blood test in Jan.

Unfortunately I never know which day the nurse is coming to do the blood test so can only leave 12 hours after Levothyroxine before they do the blood test.

If I don’t have any luck getting FT3 done with these next blood tests and I can’t get the endo to do them when I eventually get seen by one (I am on the waiting list to see one) I will have to try to save up for a private blood test. As my finances are not good I’m trying to get them all done on the NHS if at all possible.

[SlowDragon Administrator in reply to AlphaWolf5195]

I have got to fill in a form in 3 months time requesting a nurse to come out to do a blood test so will ask for FT3 to be done as well as FT4 and TSH and see whether they will do it, I’ll also ask for iron, B12, folate and vitamin d.

Come back with new post once you get results

[AlphaWolf5195 in reply to SlowDragon]

Thanks for all your help, I really appreciate it. I’ll make a new post when I have my next blood test results, which at the moment should be in January.