Help with results and consultant visit please

[dizzy864]

I've been increasing my meds the last 9 months in the hope that I will feel better. It has not worked!! That may be down to the fact that I went down with shingle on Christmas eve and still have nerve pain, so sleeping is difficult. I had an extreme allergic reaction to Naproxen, followed by an allergic reaction to co codomol and then an allergic reaction after 2 tablets to gabapentin. My holiday in the states, which was intended to help me over shingles was a disaster - had to stop co codomol two days in, so had lots of pain and withdrawal symptoms from co codomol - extreme tiredness and muscle aches as well as the shingles nerve pain. We could not do anything. Flight home was a nightmare - very turbulent the whole way and my really painful back kept rubbing and being bounced against the seat back. As soon as we landed, I rushed to the loo to remove my bra!!

Both blood draws were done in accordance with the recommendations on this site.

30/12/19 taking 125mcg levo and 65mcg lio : Free T4 16.5 ( 11 - 23 )

Free T3 8.49 ( 3.1 - 6.8 ) TSH has been suppressed for years.

9/3/20 reduced to 100mcg levo and 65mcg lio: Free T4 16.4 / Free T3 8.82 same ranges. I realise this is too high. The problem is that when I reduced levo from 125mcg to 100mcg it pushed T3 up from 8.49 to 8.82 with only a marginal decrease in free T4. I'd been on the lower dose for 9 weeks prior to the blood draw. I'm not sure that reducing levo by 25mcg again will actually cause a drop in T3. What should I do?

I found the small increase of lio from 60 to 65mcg a day has really helped with my tiredness but not with anything else, so I am reluctant to reduce T3.

I saw a consultant privately yesterday. I traveled 280 mile round trip! He doesn't think my problems are thyroid. He did not say what they are due to. When I asked him, he told me he did not know!! Was very stuck on my being depressed although I argued with this repeatedly. Confirmed I have hashi s - ofcourse I have, It's the most common thyroid problem! I asked if I could try lio only. Delighted when he told me it was a good idea, adding it's positive, it's doing something and it works for a lot of people, although not every one. I asked for advice on how to make the switch. He said to, " reduce by 0.1 every two weeks until levo stopped and then reduce lio by 5mcg." I have no idea what he meant by 0.1. I pointed out that that would mean that I am back to 60mcg of lio only and no levo. I said that is not doable and I'd be below range. I also pointed out that every two weeks was far too rapid. I showed him some previous results when I was on 100mcg levo /60mcg lio when I was below half way on levo and 67% on lio. He replied that ranges are there for a reason and you only need to be just in the range.My TSH would raise when down to that level. I was beyond speechless!!

He's told me to return to my gp and arrange a celiac test - done 2 years ago and negative, A urine sugar test repeated on three separate mornings, and a thyroid anti body test. He also complained that he had not been given my last bone density test results. I'm to get those to him. Another thorny subject. My last result was down slightly more than expected on one of three tests. Previous doctor reckons it's because I'm over medicated, I reckon it's due to inactivity due to ill health.

What really upset me was that his on line bio showed him to be a thyroid specialist. He told us he was NOT a thyroid specialist, the endocrine system is his speciality. If it had said that on line we would not have gone. Oh, and he arrived 45 minutes late for our appointment!! I may be cynical but I think the reason his bio was misleading was he knows he can charge more as a thyroid specialist than as an endocrine specialist due to supply and demand. That's £250 instead of £130 - 140 each patient.

He wants to phone me in 6 weeks when the results are back - another £180.

I have no choice now but to go it alone. I'll have the tests done that he's asked for. The anti body one might actually be useful. I really can't see how any thing else can cause the huge array of symptoms that I have. Does any one know if anything else can cause so many hypo symptoms? My biggest concern is severe muscle weakness. i've used an excersise bike six days a week for almost thirty years. 6 months ago, I had to stop - I don't have the strength to push the pedals on the lowest resistence for even 10 minutes. I also can't stand. Walking is not a major issue, although I do get tired quickly but just standing makes me really ache and incredibly tired. I sit down for half an hour, recover and can stand again. I thought this meant I had a severe T3 shortage. Has anyone any ideas?

Sorry this has been long. I really needed to vent!!!

[SlowDragon Administrator]

What are your most recent vitamin D, folate, ferritin and B12 results

Are you on strictly gluten free diet?

How do you take your T3? As split dose or single dose?

Your results suggest you might be better reducing the T3, rather than the levothyroxine

Being over medicated can make you very tired and weak

[dizzy864 in reply to SlowDragon]

Thanks for your reply. Vitamin levels are going down, in spite of taking more! They weren't tested this time so last done 30/12/19 when I had shingles - not sure if that affected them.

vit D 93 > 75 9/5/19 it was 86 5/4/18 it was 129

Vit B12 621 ( 197.0 - 771.0 ) 9/5/19 it was 747

serum folate was 11.9 ( 2.0 - 18.7 ) 9/5/19 it was 18.7

serum ferritin was 39.7 ( 20.0 - 260.0 ) 9/5/19 it was 43.9

I really don't understand it as I'm taking a lot more of everything as I thought levels were too low back in May.

My bladder is very bad - I pee incessantly. It's the first thing that improves when I increase the meds. Increasing Lio made a big difference to my tiredness and I sleep for less time. A couple of years ago, I tried reducing when ordered by my gp. and it made me really, really ill for months. I also just wanted to sleep all of the time. I don't see how it can be hyper. I don't feel hyper. When the doctor put me up to 150mcg of levo, I felt hyper and I put it down again to the 125.

I am reluctant to reduce T3 as I've read that many of the symptoms I have are caused by a severe shortage of T3. I know that my bloods don't support that. My gp told me it's possible that T3 is only attaching to some of the places it should instead of all and she thinks I may be resistant in this way. The consultant I saw did say I should be taking a very high dose vit C every day - the biggest I can get. I will do that.

I also wonder if some or even all of my symptoms are caused by hashi s. My level of hypo is not consistent. I have extremes - days when I get a lot done and some days when all I can manage is to sit and mope.

[dizzy864 in reply to dizzy864]

Hi, I forgot to mention that the consultant did tell me - you're a very unusual case!!

[SlowDragon Administrator in reply to dizzy864]

Are you on strictly gluten free diet?

Many of us find it essential

Getting coeliac blood test first if not had one done

[dizzy864 in reply to SlowDragon]

Hi, No I'm not gluten free. I did go completely gluten and dairy free for a couple of months three years ago. It made absolutely no difference. I had the coeliac test a couple of years ago, that showed I did not have a problem. I'm not sure why the consultant wants it repeated but he was definite it should be.

[Marz]

How long did you leave off the T3 before testing ? Are you sure all the tests will be done ?

[dizzy864 in reply to Marz]

Hi, Thanks for your reply.

I left off levo for 24 hours and lio for almost 12 . No, I'm not sure I will get all the tests done. I told the consultant that I had asked my gp for an anti bodies test and she'd refused. He said, she will do it if I ask. I will have to wait and see.

[Batty1]

Shingles are no joke and enough to invoke a sane person to lose their marbles. I feel for you I developed shingles Shortly after my thyroidectomy 3yrs ago it was horrible dealing with losing my thyroid, lousy Endos and shingles it pushed me over the edge.

Get well soon!

[dizzy864]

Thank you so much for your sympathy. I have a rather large cat that likes to surprise us by jumping from the back of one chair onto our back. When we move in surprise, he digs his claws in. He'd done this to me twice in the week before I became ill. When my back became very sore, I assumed the deeper scratches had infected. I knew nothing about shingles and I'm too young to be vacinated here in the UK. I did not seek medical help until far too late. I then suffered with side affects from an anti viral that did me absolutely no good. Twelve week later, I am a bit less sore and am hopeful it will go soon. I had to visit an endo whilst I still had shingles - I'd waited seven months for an appointment and no way was I missing it! I was so ill on the day. I got there to be told - it's out of my field for everything I asked!!

At least I hadn't had a thyroidectomy!! So i'm grateful for small mercies!

Stay well.

[Locky1971]

Do you take any acidophilus for the gut. Sometimes inflammation in the gut can stop vitamins and minerals from being absorbed. That could be why your b12 and ferritin are dropping. Try magnesium for the muscles. It helps with muscle function but avoid magnesium oxide as it can make it worse. I take magnesium citrate. It's good if you get constipated too. I feel for you as I have hashimotos and I had doctors telling me I was a mystery but offering no advice . I've found I feel best on natural dessicated thyroid medication I'm on nature throid at the moment. I've had a flare up recently so I'm on 2 1/2 grains a day in a slpit dose. Starting to feel a bit better. I follow a paleo style diet as I'm wheat intolerant (tested negative for celiac) dairy makes me bunged up in my sinuses and potatoes make my joints ache. That's why I follow paleo. I feel better removing certain foods from my diet. I'm thinking about going to a functional medicine practitioner as they look at the whole body and not just the thyroid. Good luck.