Hypothyroid dosage too high??

[casper11]

Hi. I was hoping someone maybe able to help. I have been hypothyroid for nearly 5years. After a few months of taking thyroxine. I was feeling great on 100mg a day. Tsh levels were always around 2. After having my 2nd child 3 years ago. I was feeling tired and fuzzy headed again. But put it down to sleepless nights. But at annual bloods. Levels were 45. So put on 200mg a day. Which I have been feeling fine up to a couple of months ago. Just not feeling myself. Fuzzy jittery sort of feeling. So tired. Palpitations. The usual symptoms I guess. So went for bloods expecting thyroid to be levels to be out of range again. But no. Tsh level of
0.65. So gp happy. But I am feeling so rotten. I am wondering if I am on too highly a dose??? Gp prescribed anti depressants. As I said I was moody and irritable quite a lot of the time. Just fed up with feeling like this I guess.

[casper11]

Sorry posted before I finished. Lol. Just wondered if anyone has any experience of this? Any help before I speak to my doctor again would be great. Thanks. X

[Pleasemrstweedie]

Did your GP test anything other than your TSH?

[Rummikub]

Palpitations may indicate too high a dose according to my consultant. What did your GP say about palpitations?
And why the huge jump from 100 to 200? Could you try 150?

[pressone]

That is a huge jumo. I was feeling fuzzy and generally blagh (sorry don't know how to describe it!). I have been on 150mcg ( I suspect you mean mcg not mg that would be HUGE!) for about 10 years, yearly bloods all OK, GP happy with thyroxine dosage, I wasn't I told her I wanted to try a small drop to 125mcg felt much better, dropped again to 100, too tired, too low, back up to 125 and all is well with the world.

I find my oestrogen levels make a huge difference - am now peri-menopausal and that is what kicked off my change in levels, body still making as much - well actually as little as it always did, just burning it up at a different rate now.

I'm not medically trained but if you have had a baby, started and then stopped breastfeeding, gone on the pill I would guess the same thing is happening to you/

[pressone]

jump not jumo!

[Clarella]

Everyone is different on thyroxine - some people do feel well with a higher Tsh, others not. Most would be delighted with a gp who allows 0.65!

It is a jump, I think most may have just gone to 150 or 175 but may have had to be done to then reduce.

How long have you been taking 200?

The body takes a long time to adjust to correct doses - 3 months or more. It sort of lags behind. It can be a long process to get it right. Technically I think it's usual to titrate up slowly actually to avoid what you're experiencing.

You may still be adjusting physically and feel great in another month, or not - it's impossible to tell!

Ask if you can drop to 175 or 150 - personally I'd try 175 but up to you. 45 Tsh was quite high. But you'll have to wait a good 3 months or more at that level to know how you actually feel. In the future you may even find that you need to adjust the dose in tiny ways eg 150/175 every other day. I need 125/150.

I suspect you were still producing some of your own t4 and more importantly some t3 (normal thyroids make 20%) before your thyroid gave up the ghost. Or antibodies were less - it's a complicated organ! It will no longer be making its own t3, which acts instantly in the body. T4 is a prohormone, it gets converted to t3 around the body, and t4 has a longer half life. So your good Tsh may now need to be less than 2 iykwim? But maybe not!

The other issue is that ferritin levels can be affected as you've lost muscle when hypo. You could ask gp to check this and other things such as vit d, b12 and folate. They need to be good to feel well. My ferritin was 55 (only borderline if that) and I felt awful with a dose increase due to this. It's taken a long time to sort the ferritin, re build muscle and start to feel ok.

What is most important is that friends and family know how you feel and that this can take a long time to correct.

Shaking and fast heart rates are linked to hyper - it does sound like this is what you're experiencing - however I know from my experiences I've felt shaky and heart fluttery when underactive as my autonomative (sp?) system wasn't coping well and I'd lost mean muscle mass - very weak muscles.

Getting thyroid stuff right is a bugger.

[casper11]

Hi. Thanks for all your reply. I am waiting for the gp to call back later. So will be asking a lot. I am 40. I was breastfeeding my daughter when I needed the dose increase. That was 18 months ago. I felt so much better for it. I lost 4stone in weight due to diet and more exercise. But since feeling awful. I am struggling to keep my eyes open. So not exercising very much. So put on a stone. I think they have only tested for tsh levels. Never been told about any other levels. Never seen a specialist about my thyroid only the gp. I have been reading lots on the British thyroid association. Which has made me doubt the gp advice. I guess I know something is not right and I am not going mad. But I looked a blubbering mess when I saw the last gp. My daughter was not sleeping great. So lack of sleep makes me feel teary. I hope I can hold myself together when I speak to him later. Lol. X

[casper11]

Well I spoke to a different gp. Mine wasn't working. He was happy to drop down to 150mcg. To see if that makes any difference. He didn't go into detail with tests and levels. Of course he calls when my daughter is being a monkey and I couldn't hear or think very well. Really hoping I feel better quickly. X

[Clarella]

Hi Casper, I am 38 and also bf a youngster. I'd urge you to ask gp to rule out any other issues such as ferritin etc as well. Hope you feel better soon, as I said it can take a good few weeks x

[casper11]

Hi clarella. Thanks that was one of the things I meant to ask. Next time I am writing a list. So I don't forget. He wasn't the most chatty doctor. My normal one is very easy to talk to. It's so hard to get through the day when I feel like this. My DD is 3yrs. So very energetic. I feel so old and fed up. X

[Yankeepoodle]

Definitely get a follow up to check ferritin. Have you been having heavy periods? I had just your symptoms (low mood, tired, palpitations, brain fog) and couldn't understand why my TSH was normal. When I eventually had ferritin checked for an unrelated reason it was low (14). It takes months to sort it but I now feel a million times better - I'm young again! Hope you get it sorted.

[Clarella]

I'd actually rethink dropping down to 150 , maybe try 175 - did you say you'd been on 200 for a long time? As in over 3-6 months? Your symptoms could be something like ferritin or b12. A Tsh of just about 1 is really good. You could ask for referral to endo or to check t4 and t3 but they're more likely to check other things first, and I think it's relevant to do so.

Perhaps book a double appt and have a good discussion - write it all down first and even hand it over! I had to do this as brain was so addled.

I had really bad restless leg syndrome all over (itchy bones) muscle cramps, muscle tightening before periods and generally a physical wreck. Brain fog too. That was at ferritin 55 too so I think everyone is different. I was also diagnosed with hypermobility syndrome but I think the ferritin and slightly off thyroid and trying to carry on ignoring all the pain and weakness were mainly to blame. I've been off work six months recovering my muscles, which simply couldn't happen after slight thyroid correction until I started boosting iron. And it's been slow work too.

[Clarella]

I too am starting to feel younger!

I felt literally like I was 90. Extremely frail. But now, even my skin is feeling less dry and tight - like a when I was a child! Including my feet!

[casper11]

Hi clarella. I am dropping to 2x100mcg one day. Then 1x100mcg the next. So averaging at 150mcg. He didn't offer any change of strength tabs to go to 175. So hoping it will be ok. I don't think I can feel any worse. Up to now I have always thought. I take the meds and carry on as usual. But this is really getting me down. I will ask for referral if nothing improves. Thanks for the advice. X

[Clarella]

Um I feel that's neglectful on the gps part? Thyroxine comes in 25s and 50s. It is ok to average it out like that as half life is long but better all round if you're on a regular dose.

I'm sensing that you could do with a proper discussion and consultation. You don't want to swing hypo again. Tsh 45 was quite high. I feel awful at 13, and had to raise by 25.

[Clarella]

The British thyroid foundation is the charitable wing of the British thyroid association. You may find they are of help, and there are numbers you can ring to chat to volunteers.

Please do get an appt to chat about other possible reasons for your issues and at the least get a different prescription for your thyroxine. It's fine to do that briefly but I feel not long term. Gp may have assumed you have some 50s perhaps?

Absorption of thyroxine is affected in the stomach by several things do I feel it's best to have regular daily doses as much as possible to create a base line daily amount.

[Rummikub]

Clarella you come across as very knowledgable and I'm relative newby to this.
Can I ask is t4 thyroxine?
And have you any idea why doctors won't prescribe thyronine/ t3 apart from cost? If let well on thyronine. The the thyroxine.

OP I think you should push to get the 50 mcg tablets.

[casper11]

Hi. When I put in for my repeat prescription next week. I will write 150mcg. First day of 100mcg and not feeling so jittery. But I don't think I would feel the difference so quickly. So it's prob in my mind. Lol. I don't like to bother the docs too much. But will push for more info if I don't feel better soon. Thanks. X

[Clarella]

Rummikub (love that game!) ive had years of learning about it, having to get my head around it and suffering when it's not right. Also a member of the BTF which I recommend looking at if not joining.

T4 is levothyroxine, but it's a prohormone, our bodies actually use t3 for energy.

The very best explanation is in a book by the BMA by Dr Toft on thyroid disorders. I recommend anyone with an issue getting it, I've had to show my gp (and an endo) that sertaline was listed as a possible issue with thyroxine as well as the fact that most people need to be Tsh 0.5-2 max to feel well. Many gps do not do this. (Hence many would be pleased with the ops gp!) My info comes from here, mumsnet, BTA, btf, and I've read health unlocked with a careful pinch of salt. Much there has been helpful but there's also some unhelpful stuff. The toft book clearly says also that the ideal medication would be t4 with a little t3, but due to the different half lives this is tricky.

The bta and btf now embrace the eu recognition that some patients are better on t4 and t3. There's an excellent article by Dr perros from the freeman in newcastle however as to why t4 only is generally more stable IF Tsh is maintained. A few individuals simply do better with a little t3. He contributes to the btf magazines too.

What is really missing from all the mainstream advice (but has been carefully listed here and is on healthy locked) is that we need good ferritin, b12, folate and vit d. Imo unless pernicious anaemia is an issue (b12 - often associated with hypothyroidism) ferritin and vit d are most likely to be deficient in women, esp after pregnancy as it can drain both. And apparently it helps with t4-t3 conversion (I'm not sure about this science) but from my basic understanding and experience, you need ferritin/ iron for muscle growth. Thyroid issues impact lean muscle mass. If your iron is lagging there's no way your body can fully recover with good thyroxine levels quickly. I've seen studies which indicate hypothyroidism and hyperthyroidism can sometimes affect ferritin levels. My endo did comment that my ferritin was a little low. (55 - not that low tbh) However, I only got treated for it due to terrible muscle itching and cramps (restless leg syndrome) that was a bit odd as far as I can tell!

On here and health unlocked I've seen that 70-90 is best for thyroid hormones to work well, my muscle symptoms have only stopped when I reached around 80. So from my own experience id concur with this.

Thyroid stuff has buggered my life up a couple of times as it was missed. I'm very slim. So knowledge to me is power! I think many people with thyroid issues feel low and unconfident anyway as a result of the condition. So it's extra hard to keep going to the gp and trust them.

I do find the body really can lag behind results for some months, possibly due to issues such as iron etc. Or it just takes time to rebuild everything.

[Clarella]

Hi Casper - the half life is about 7 days so it will take a good few weeks to come out of your system.

[Clarella]

I know you won't like to bother them Casper, but it is their job.

Have they said when to retest? Earliest might be 6 weeks, potentially 4. Best if 3 months unless you're symptomatic.

[casper11]

Hi clarella. My your so brainy and knowledgeable. My brain is a jumbled mess. But I have been looking at a lot of info on ferritin. And all the symptoms of low levels describe how I am feeling. I am going to print out lots of info to show my gp. Even though he said my iron level was ok. I think I need to be brave and a little pushy for more detail and hope they will test more. They haven't said anything about retesting. I only normally have it yearly. I have started taking B vitamins. Partially B12. And I get out in the sunshine walking my dog as much as I can. I live in the southwest of England. So it's not to bad weather wise. So don't think vit D is a issue. It's a real minefield of info out there. X

[Rummikub]

Thanks for all that useful info!

I asked my consultant about being on t3 and he said not many need it. But I know when I was on thyronine/t3 I felt fine.

I kept saying to him that the body doesn't make hormones without train so there must be a function for the t3/t4 combo.

Where can I find that eu info supporting the addition of t3? I'm going to show the consultant.

[Clarella]

Casper maybe just ask receptionist what the level was and the range. You can try raising it yourself but I always think best to work with gp.

I've been through hell with all this over the last year so learning about it helps. The best description of low ferritin is on patient.co.uk, non aneamic iron deficiency. But, I think everyone is different. I've had symptoms at 55 (range up to 200) others wouldn't have. And it may have been other factors, such as being on sertraline.

[Clarella]

Rummi- I find this paper very helpful. I think he's referring to the BTF publications, who he now advises for.

When I read it and match to my own subjective experiences, it seems clear that t4 is a good therapy as long as carefully managed with patient, and Tsh kept within lower limits, t4 upper. As explained in toft BMA book. T4 is more 'stable' than t3. And then seems sensible to maximise everything else eg ferritin, including keeping fit and strong. However it takes a lot of time, gp support and effort from patient to do this. I feel this is where hypo patient management is lacking.

There are definitely a few who've found combo treatment better and rarely some have to have just t3.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3821462/