Problems taking Levothyroxine

[Gingernut44]

This is my first post and I need help!

To cut a long story short, I had RAI treatment for a multi nodular goitre in March 2018 and by July 2018 my TSH was 5.2 so the Endo passed me on to the care of my Doctor suggesting I started levothyroxine 50mgs as I was symptomatic. Eventually rising to 100 mgs in November 2018. When I had my blood taken in January of this year, the Doctor told me to carry on taking 100 mgs as my TSH was 0.62. When I told him about how I was feeling, headache 24/7, severe bloating 24/7, "stomach ache" 24/7 and a huge weight gain which I thought was down to the levo itself, he said "well stop taking it and have a blood test in 6 weeks time" which wasn't what I was expecting. Anyway, having found your forum and learning about the various tests I should ask for, I wrote him a letter 6 days before the six week blood test asking for the tests suggested. I heard nothing from him, so when I went to the surgery, I had to badger the nurse to "check the appropriate boxes", my Doctor was on holiday so I couldn't ask him.

Today, 22 February (two days after my blood test date) I received a letter from him stating that he was prepared to book my TSH, folate, ferritin and B12 but that it was not appropriate to have an FT4 or FT3 test as I was already taking levothyroxine ?? This is the same Doctor who told me to stop taking it six weeks ago ! How long can you stop taking levothyroxine before you are deemed not to be taking it?

Here are my results:

TSH 7.51 mlU/L [0.3 - 5.0]

FT4 15.5 pmol/L [12.0 - 22.0]

the Path Lab wouldn't do FT3

B12 503 ng/l [200.0 - 960.0]

Ferritin 58 ng/ml [20.0 - 350.0]

Folate 2.9 ng/ml [3.0 - 18.0]

[SlowDragon Administrator]

Your results clearly show you are hypothyroid

What brand of Levothyroxine were you taking?

Many, many patients do not get on with Teva brand

P

Folate is BELOW range and needs supplementing. GP should prescribe

Alternatively....Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Ferritin is borderline, eating liver or liver pate once a week and/or other iron rich foods plus daily vitamin C, can help improve iron absorption

You need vitamin D tested - £29

vitamindtest.org.uk

Gut issues are often linked to gluten intolerance with Hashimoto's or Graves

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2017/02/3-im...

[Gingernut44 in reply to SlowDragon]

Sorry, forgot to mention, they did Vit D and my result was 91 nmol/L [>50.0] so am well in on that. When I was hyper, they did test for Graves which was negative, and I had an USS on my thyroid when they discovered multi nodular goitre so I am assuming that my hypo is not Hashimotos but the result of RAI treatment. I opted for the lowest dose given.

I was started on 50 mgs "NorthStar" Actavis, then on 75 mgs 50 Actavis, 25 Wockhardt and finally 100 mgs Actavis, but instead of feeling better, I was suffering with those "side effects" ? which also included constipation. My other question was how long can you be off levothyroxine before your deemed not to be taking it?

[SlowDragon Administrator in reply to Gingernut44]

So vitamin D is pretty good, do you supplement?

Suspect you have poor conversion. Many of us with autoimmune disease, Hashimoto's or Graves, have poor conversion and often gluten issues too

All four vitamins need to be optimal, frequently needing supplementing to do so

Trying strictly gluten free, is the only way to know if it helps.

Once vitamins are optimal and food intolerances addressed, if FT3 remains low then many need addition of small dose of T3

As dose is increased, TSH drops. Low TSH can reduce the rate of conversion.

But lower dose of Levothyroxine leaves us hypothyroid....so it's chicken and egg

Taking high enough dose of Levothyroxine results in low TSH and poor conversion. But lower dose of Levothyroxine gives higher TSH, but doesn't give enough FT4 to raise FT3 high enough

[Gingernut44 in reply to SlowDragon]

Thanks for your reply SlowDragon. It seems that my Vit D is OK with a total Vit D (serum) 91 nmol/L [.50.0] and no, I haven't supplemented, its the first time I've had it measured. In the winter, even if there is only a small shaft of sunlight in the garden I will try and stand in it for 10 minutes (if it's out that long!)

I think that, when my GP puts me back on levothyroxine, I will get a FT3 test done privately eight weeks in so that I can see if I'm converting.

My hypo is due to RAI treatment which I was most certainly urged to have it, the other option offered was a full thyroidectomy. I was told that I could not take carbimazole for too long (no more than a year) because it can cause the problematic thyroid to turn cancerous so I went ahead. I wish now that I had questioned that because I was eventually quite well on it once it had brought my over-active thyroid under control.

Oh well, one of life's little mistakes, that's why I want to get this under active business under control.

[greygoose in reply to Gingernut44]

My other question was how long can you be off levothyroxine before your deemed not to be taking it?

Your question is rather obscure, but I think the answer must be: as long as it takes. I would have thought that a TSH rising to 7.51 would be proof enough. But, what was your TSH when you were taking it?

But, I cannot understand what your GP is hoping to achieve by telling you to stop it, and test in six weeks. Surely he knows your TSH was over 5 when you started levo, and that is hypo - OK, they may class it as 'subclinical' hypo in the NHS, but in the real world, that is hypo.

Was he perhaps trying to prove that the 'side-effects' weren't due to the levo? "headache 24/7, severe bloating 24/7, "stomach ache" 24/7 and a huge weight gain" are hypo symptoms and more likely to be due to being under-medicated, or a poor converter, than side-effects of the levo. And, just because you didn't have those particular symptoms before levo, doesn't prove that it's the levo that caused them. It's not unheard of to develop a lot more hypo symptoms when you start levo, than you had before, but they're still hypo symptoms. So, how do you feel now? Have those symptoms/side-effects disappeared?

I really think you should consider getting your FT4 and FT3 tested together, privately - when you're back on levo again - to see how well you convert - but not until your TSH has come down to 1 or under. It doesn't matter how much levo you can't, if you have trouble converting it, you're going to remain hypo.

[Gingernut44 in reply to greygoose]

Many thanks for your reply Greygoose. I'm sorry if my post seems to be a bit rambling but it is difficult to put into words how I'm feeling at the moment. Let down by my GP would be the first thing. He was quite flippant when I told him that I felt worse since taking the levo and basically dismissed me with, "well, you weren't too much over the range so stop taking it and have a blood test in six weeks". In the first week or so, the severe bloating, headaches and constipation/tummy aches disappeared but, consequently, especially in the last four weeks I have got more and more symptoms of hypo but not the headaches, or what I think was symptoms of IBS, just a little bit of bloating and lots more aches and pains. This was confirmed by my last blood test (20 February) with my TSH now 7.51. My GP was on holiday this last week but I have been contacted by the Surgery to book an appointment with him on Monday 25 Feb as another Doctor in the Practice had seen my results. I had got down to TSH 0.62 on 100 mgs levo and I am wondering if I may have been suffering side effects from the excipients.

Yesterday I received a letter from him in rely to mine (can't ever seem to get an appointment with this GP so thought a letter might get his attention!) Unfortunately, probably due to the fact that it was half term here last week or they are short staffed in the secretarial department, his letter to me arrived two days after my blood test. In his letter he states "it is not appropriate to have an FT4 or FT3 test as you are already taking Levothyroxine". He is the same doctor who told me to stop taking it six weeks ago!

I am totally confused and very cross. Any suggestions you might have would be very welcome.

[greygoose in reply to Gingernut44]

Well, he's wrong on all counts. And, instead of taking you off levo all together, he should have changed the brand of levo you're taking to see if it was the excipients causing the side-effects. You can't just be a little bit hypo, if your thyroid is struggling, you are hypo, and it isn't going to go away. Now you are very over-range, so I hope he will put you back on levo, now.

And, he wrong about not testing FT4 and FT3. He hasn't got a clue, has he! He should not be testing by the TSH, because that is the best way to keep the patient sick. It's the FT3 that is the most important number when you are on thyroid hormone replacement (levo), but I know a lot of NHS labs refuse to do it. Failing that, he should be looking at the FT4 and dosing by that.

It's perfectly normal that the symptoms/side-effects went away in the first week after stopping levo, this happens to almost everybody. It doesn't mean anything. What is important is the symptoms that come creeping back. If the bloating/IBS symptoms didn't come back, then I think you can take it that they were due to the brand of levo you were taking, so it really is important that you try another brand. There are several to try in the UK.

[Gingernut44 in reply to greygoose]

Many thanks Greygoose - I will mention your observations when I speak to him on Monday. 'phone calls are all I've had from Endo and GP since my RAI treatment last March. Lets hope he gets his act together, if not, we may be parting company !

[greygoose in reply to Gingernut44]

Well, don't be surprised if he says it's all rubbish! lol Not only does he not know, he doesn't want to know.

[Gingernut44 in reply to greygoose]

I think you could be right ☹️

[SeasideSusie Remembering]

Gingernut44

I was told that I could not take carbimazole for too long (no more than a year) because it can cause the problematic thyroid to turn cancerous

They do like to to scare us with their tales don't they! I have a friend who has been on Carbimazole for many years. The GP keeps on about surgery or RAI but she controls everything very well, she knows when she needs to take it and what dose and is doing very well without any other intervention.

You can check the ingredients of all available thyroid hormone replacements here

thyroiduk.org/tuk/treatment...

See if there is anything in the Levo that you have taken that you know may cause you problems. You can always ask your GP to prescribe an alternative, Tirosint seems to be the purest.

What's happening about your folate deficiency?

Ferritin could do with improving, best way is to eat liver - no more than 200g per week due to high Vit A content.

B12 isn't too bad but is recommended to be above 550 ng/L.

If you're considering doing a private test to find out what your FT3 is, I would recommend a full thyroid/vitamin panel with Medichecks, this includes Active B12 which is a better test than Serum B12. Only total B12 is tested when it's serum B12, with the Active B12 test it tells you what is available to be taken up by the cells. You can have a good Serum B12 result but poor Active B12 result. Excellent value at the moment with £20 off, that price wont last forever though. If it's back to full price then use code THYROIDUK for 10% discount.

medichecks.com/thyroid-func...

If you decide to see a private endo, choose very carefully, most of them also work within the NHS and toe the NHS line. You can send for a list of thyroid friendly endos from Dionne at ThyroidUK

[e-mail]

then ask on the forum for feedback by private message on any that you are considering.

[Gingernut44 in reply to SeasideSusie]

Many thanks for your reply Susie, Of course, if I knew then what I know now I probably would have asked to stay on carbimazole longer as I was tolerating that quite well apart from the occasional very itchy skin! and was back to full energy, but that's another story, I am where I am now - no good looking back. I am currently on 75 mgs daily Wockhardt and still having headaches and severe bloating. I have a blood test booked for 8.25 on Thursday morning (fasting of course) and taking my Levo at about 8.30 the day before. I am hoping to go up to 100 mgs daily as this was where I was before my GP stopped my meds. As Shaws suggested, I will get a full Medichecks blood done when my TSH is 1 or below. I have been taking 1 tablet per day of Igennus Super B complex in the hope that my folate level will rise, which I have temporarily stopped in time for my blood test as it contains biotin. As for the ferritin, I am still considering taking beef liver tabs as I cannot stomach eating liver, and knowing what problems I have with taking synthetic drugs I don't know which ferritin supplement would be suitable for me. I will wait until I have my blood results, which I'm sure is only going to be TSH. At the moment I'm feeling really fed up with no energy and have been suffering with plantar fasciitis in my left foot since my GP took me off Levo in early January and exercises for the condition seem to be making no difference and has put a strain on my hip and lower back on my right side so even walking around the house is a pain (pun intended).