Gp visit..... i have finally given up

[babycatcher7572]

Hi All

After having blood results the other day, went for a follow up appointment with my GP. I really donnot know why i bother but i think i went as im feeling a liitle lost in the fog with my results and meds at the moment and thought he might be able to help....lol.

I was taking 75mcg cynomel and 50 mcg levo which id restarted due to returning symptoms on t3 only ( i had been off it for around 7 weeks). I n general i feel much better than last year unless i exert myself...either at home or work...then im quite fatigued and mood follows. My memory is shockingly bad too and have a increased volume in my tinnitus which is horrid.

My results were... i stopped my t3/t4 the day before the draw.

FT3 7.3 ( 4-6.8 )

FT4 2.0 ( 12-22)

TSH 0.05 ( 0.3-4.2)

According to GP my tsh is now suppressed and i am now at risk of osteoporosis and AF and advised me to drop the t3. And he says my bloods are now normal and that it isnt my thyroid anymore thats causing me any fatigue or symptoms. He said he'd spoken to a biochemist about the reliability of the saliva test and deemed it inaccurate and unreliable ( mine diagnosed adrenal exhausion) , favouring the blood cortisol or short synthacen test (which of course had come out normal). So...there is nothing else he can test for or is prepared to test for....thank you and goodbye!

The only positive from this visit was that he said he would refer to dr skinner....i dont think he knew who he was tho....and i said no more about it, leaving his details with the receptionist.

But what appalling care.....We have moved house again recently so i will be changing surgeries....again!!! I dont think i can be bothered to go thro everything again tho.....

I have made a complete pigs ear of my recovery plan through apathy, depression and fatigue. Im dreading seeing Dr P too......as his diaries have become non existant . I feel like im giving up but probably need another good kick up the butt and to get a grip......sorry another gloomy blog :(((

hugs to all.......K x

[Moggie]

Have you ever thought about getting a referal to a gastro to see if you have gut issues as you seem to be going around and around in circles and getting nowhere fast. My endo said exactly what your GP said to you about my remaining symptoms being down to other issues and I didn't beleive him - 6 months later and having had some important vitamins corrected by him that my GP chose to ignore I am now feeling so much better, and I'm not even on T3 anymore. I know its a basic question but how is your ferritin level looking - that was the major one with me. I would be going back to my GP and asking for a referral to a gastro if I were you - you can take as much thryoid medication as you want but if the gut is unable to handle it then it wont do you any good, this is the next step my endo wants me to take and he has been spot on so far.

Do you think it would be wise, at this present time, to change your GP as if you do you will have to be prepared to have your referral to Dr.Skinner cancelled as you know what most GP's are like with him - I'm amazed your GP is actually going to refer you.

Dont worry about the gloomy blog - we are all guilty of writting those from time to time and if you cant unload how you really feel on this site where can you unload your frustrations and problems.

Wishing you well.

Moggie x

[babycatcher7572 in reply to Moggie]

Thank you Moggie....i have considered this before as after taking iron and b12 for a while my levels hadnt really changed much but i will ask my gp net time i see him. I only think he's referring me to Dr S , one because he hasnt heard of him and two he is clueless as what to do next!Anything to get me out of his surgery! Ill give him his due though...i was quite tearful again and i asked him whether i should have anti d's but he said to see Dr P first. I think your right i may just stay put for now. My last ferritin was 34 so im still on iron. Wisjing you well too Moggie K xx

[Hidden in reply to babycatcher7572]

Hi, Do you know what your results for B12 and folate were?

[babycatcher7572 in reply to Hidden]

Hi...yes b12 was around 325 ish, folate 5.6 which if i remember was low in its range but not out. X

[Hidden in reply to babycatcher7572]

Both very low, and might explain why you still feel bad despite playing around with thyroid meds. Did you take sublinguals for a while? They don't work for everyone, you might be better on B12 jabs. Of course you're "in range" so convincing the doctor is another matter. You could ask to be referred for the Active B12 test by your doctor if you live near London? They do it at St Thomas'. You can phone or email St Thomas' (link below) and ask them what you need to do. Worth asking for MMA and homocysteine tests at the same time. You need to be supplement free for at least a month. You have to pay, but I think it's cheaper doing it the referral way. I was deficient at 313, and my folate was a bit lower than yours. My health has improved drastically on B12 and folate treatment. You've probably seem the Thyroid UK link to the active B12 test, but here it is again, with an explanation of the tests for you and your GP:

thyroiduk.org.uk/tuk/testin...

biolab.co.uk/docs/vitaminB1...

Or, I'm assuming you work in a hospital? You could ask the blood test department if they offer these tests at your hospital - active B12, MMA and homocysteine. Worth a try. I had the MMA test done at my local Nuffield, ordered by my Endo. One other thought, you are a midwife (I assume from your username)! so you will spend a lot of time around gas and air. Nitrous Oxide inactivates all the B12 in your body (don't ever give it to a B12 deficient mum), and I did see an article about midwives exposure to Nitrous Oxide:

birthinternational.com/arti...

You would perhaps have a case for getting your employer to pay for the active B12 test in fact...

H x

[Hidden in reply to Hidden]

Having read through this article again, apart from wishing dearly that I hadn't had gas and air with both my labours, it also struck me that it recommends midwives getting regular checks on their blood serum B12 levels. I just wanted to point out this wouldn't be sensitive enough, only the active B12 test would show if nitrous oxide had done any damage, absolute blood serum levels would not change. Just to reiterate, it doesn't deplete B12, it inactivates it. H x

[babycatcher7572 in reply to Hidden]

Hi Hampster1, thank you for your interesting reply. I am a midwife yes! I have been in clinical practice for 7 years now so i do wonder if the gas n air is a culprit. A few of our midwives complain of being tired, many with other symptoms and some have gone and had thyroid function tests...all come back 'normal' tho. They are lucky if they get ft4 along with a tsh. Noone seems to want to fight the system and although they listen to me with interest, they dont act upon it, i dont think any of them have asked for a b12. Ive been taking 1000mg sublingual b12 daily.

[Hidden in reply to babycatcher7572]

If other's have symptoms as well (hypo symptoms very similar to B12d symptoms) then I would have thought it was a health & safety at work issue, I really think you should pursue this, and get active B12 tests for everyone. Just googled it and the RCM has the same info:

rcm.org.uk/college/support-...

A 1000mcg daily sublingual wouldn't be enough to correct a deficiency anyway, and if you're repeatedly exposed to nitrous oxide it will be repeatedly inactivated.

Had a quick look back at your other posts, and you said you declined when you went back to work, and that after your shift you go into a strange sleep...

My advice would be to stop taking the sublingual while you investigate this so that you're free of supplements if you get further testing done.

H x

[Moggie in reply to babycatcher7572]

Did you know that it is not ideal to take thyrod medication with a ferritin level below 70. I have a link telling you about this on my works computer so will link it to you tomorrow. Could be one of the reasons that you are still feeling no better after may months of medication changes. My ferritin level was 12 six months ago and the last test showed an increase to 37, not good but a lot better than where I started, and I cant tell you how much better I feel. Cant wait to reach the optimum 70- 90 range. Just something for you to think about.

Again I have to wonder about gut issues with you as you say your levels have not changed even after supplementing. This is the main reason my endo is sending me to a gastro - even though my levels are creeping up slowly he still doesn't seem to think its right so wants further investigation carried out.

Moggie x

[Moggie in reply to babycatcher7572]

The link I promised I would send re iron deficiency and thyroid meds.

nahypothyroidism.org/deiodi...

Hope its helpful

Moggie x

[Jane104]

Just a couple of thoughts: you say you'd been off the levo for about 7 weeks. It takes something like 8-12 weeks for it to totally leave your system and as it depletes you would need to be adjusting the T3 to compensate. I'm wondering if you haven't given the T3-only long enough to find the right dose. What dose/regime has Dr P advised you to follow?

Secondly if you are taking any form of T3 your TSH is going to be unnaturally suppressed and T3 fluctuates with each dose so blood tests are not a reliable indication of what is going on even if you missed the dose prior to the test.

My biggest problem was chronic fatigue - feeling exhausted after any exertion sometimes for days and I too was told it was nothing to do with my thyroid. I've recently started taking NDT and what seems to be helping with the fatigue and adrenal symptoms is taking my NDT at night. I know I'm not taking enough to get me through a whole day yet but I feel much less stressed and exhausted. I'm not saying it's for everyone but have you tried/considered the Circadian T3 Method to help your adrenals? Don't give up. I know it's tough when you're not feeling great, it's a slow process but you'll get there in the end. I think you need to settle on a regime and stick to it for as long as possible or until you're absolutely sure it's not working.

[babycatcher7572 in reply to Jane104]

Thank you for your reply

Dr P's last recommendation was to increase t3 and to do 'whatever i feel i should' with the levo. I have to admit i still feel i need my hand holding much more than that, so was never too sure what to do. Levo didnt really elliviate any symptoms and at 100mcg just felt toxic, so i never saw much point in taking it, but wasnt sure so stayed on 50mcg...a 'just in case' way. 75mcg of t3 (cynomel) seemed a lot, especially as its seen as the purest form, so was unsure whether i should keep increasing ...was it the poor absorption that prevented the hyper symptoms i might have felt if absortion was good????

I do feel much better than earlier in the year, have lost 1 stone, i am warmer...it is the lingering fatigue and poor exercise tolerance i still struggle with on a daily basis. The t3 is definately working but now ive seen my bloods, i feel unsure about what to do.Is increasing a good idea because if i have symptoms isnt that what i need but my ft3 shows an over the range result??Will i cause harm??

I feel adrenal type symptoms are better than they were too. Dr P said that as my sleeping pattern was so poor previously, that waking myself up before im ready wouldnt be a great idea...(.actually i think he quietly poo-pooed it?) where i can see the science and benefit behind the method. So i think thats the problem....there are so many options that differ greatly between individuals...i find it hard to decide and settle on any one way of approaching a problem.......ps i dont expect you to answer all these questions lol! they are all in my head K xxx

[Jane104 in reply to babycatcher7572]

If you have poor absorption then surely it just wouldn't be in your system, it would pass through you? I really wouldn't go too much on your bloods, just concentrate on how you feel. I don't think 75mcg is a huge amount on it's own. Meant to say as well, as Moggie said, iron was a big issue for me too. Have you read Paul Robinson's book? CT3M aside, I think it might help you settle on a regime.

[tegz]

All the reports on T3 use stress low TSH is fine if patient is well but always says T3 must be in upper part of range- but NOT over range.

As suggested, NDT could be the answer as it has the 'full monty' for thyroids hormones and I don't think T2 or T1 have been fully described functionally, in the literature.

In certain cases it could make all the difference.

Apart from lack of success medically, you still have plenty of stress, and adrenals probebly do come into it.

Biochemists are biochemists because they're not practising medics -with all the 'fudge factoring' that entails.We know well that numbers can deceive here!

Dr S is a good move, anyway.

[babycatcher7572 in reply to tegz]

Thank you for your reply......Yes i think i may need a change of meds too. All the blab that fell from my gp was sooooo typical of the stories from others on here about gp's...i just sat there wondering what was the actual point of being there was!! He hasnt a clue what to do with me ....but glad Dr S will !

[tegz in reply to babycatcher7572]

The point from Jane above about C3TM highlighted that you don't mention anywhere what dose regime of T3 you were taking.

Without splitting sleep times, 2 or 3 split doses daily might be helpful.

I'm not on it- but that seems to be mentioned a lot on here & T3 is strong stuff..

[babycatcher7572 in reply to tegz]

Hi Tegz..sorry, i have been taking 75mcg by splitting into 3 x 25mcg tabs

[shaws]

These are two links:-

web.archive.org/web/2010112...

web.archive.org/web/2010112...

If there are links within these - they may not work as it is an archived site.

My TSH is 0.01 and am fine. Levothyroxine gave me more palpitations and heart effects than T3.

People who have had thyroid cancer always get enough thyroid hormone to suppress their TSH. I don't think I have read about these patients suffering heart problems or osteoporosis due to higher doses of meds or lower TSH.

Before the thyroid gland blood tests came in, patients were dosed according to symptoms. No blood tests then - doses were adjusted according to symptoms.

[babycatcher7572 in reply to shaws]

Thanks Shaws...ill have a read x

[Muffy]

Don't forget you mustn't take your thyroid meds before your blood tests, which you did, but also try to have the bloods taken as early as possible in the day.

Also in the paper for debate, British Medical Journal volume 293 27 September 1986,

'Are biolchemical tests of thyroid function of any value in monitoring patients receiving thyroxine replacement?' W D Fraser et al

You have taken Thyroxine and in this paper, for patients on thyroxine they believed the results should be as follows,

FT4 12-36

FT3 3.0 - 8.6

TSH <0.1 - 13.7

Obviously you are taking T3, but these are interesting references ranges for patients on thyroid treatment.

[Jackie]

HI I do not understand why you are not on more Levo ( T4) and less T3, T3 is very powerful. This may well make you feel better. Have you tried it? You T4 is so low., I am not surprised you do not feel well.As you are now just on T3 that is different but before that did you try more T4 and less T3?

Best wishes,

Jackie

[babycatcher7572 in reply to Jackie]

Hi Jackie, Thanks for your comments......no, initially Dr P reduced my levo which was making me feel more ill, from 100mcg to 50mcg, then to start the t3 and build up with a view to perhaps only taking t3, depending on how i reacted to it. All the levo really did for me was make me fatter, but i have felt unsure as to whether the levo was helping or not? The t3 has made me feel better and i have lost a stone in weight...it is the low ft4 readings which are confusing. Does taking t3 and t4 together mean i will naturally end up with a low ft4 reading? or do i need more ft4? Is there any point as i have a conversion issue anyway??? Sigh........

i stopped the levo at one point as id decided it wasnt helping at all but remained on 75mcg t3 only and after a few weeks i noticed a steep decline with symptoms reappearing so restarted the levo again. I had been retaking 50mcg of levo for 7 weeks before those recent blood results...so that may be why the ft4 is so low. I think ive confused everyone because im so muddled myself and seem to be making a bloomin mess of everything as usual. I really thought id be doing better than this

[Jackie in reply to babycatcher7572]

Hi T3 is definitely related to weight and indeed any symptoms. However, I do think it may have helped to be on more Levo and some T3 and seeing what the bloods were before taking and after a month. That is my good Edo`s first choice ( cheaper too) , second choice armour etc with or without a little T3 ( I need a little to keep my FT3 just in range), if neither work then she uses just T3. As I am sure you know a lot of it is trial and error, how you feel and bloods.With low T4 bloods, personally, I would say that is a strong indication that you do need more T4, levo. I have been Hypo ( Hashi) many, many years before T3 existed I used to have to just take armour, this was never perfect for me, however much I took. In fact I was overdosed by private doc with very serious consequencies. Then I saw my Eno, went on a little T3 ( which was then available) and a lot less armour ( 7 grains down to 2). Everything improved. Now, been stable on that many years.I think if Levo is still low on both, bloods, the balance must be wrong. I also think you were never on enough Levo to really see what was happening Normally T4 is taken on its own until high in range and FT3 still low. This shows the body is not converting enough T4 to FT3 ( common) then T3 is introduced,mostly at 10mcg. to start until the blood repeated

I hope his helps and does not confuse things any further.

Best wishes,

Jackie.

[babycatcher7572 in reply to Jackie]

Thanks, yes it helps very much x

[Hidden]

Hi, just read your post.

My TSH has been fluctuating but luckily my GP has increased my T4 meds. My TSH results have been:

Nov 2011 - 5.2

Feb 2012 - 2.0

Jan 2013 - 1.0

Jan 2013 (retest by my new GP) - 0.69 with anti-TPO 84,000 MIU/L

May 2013 - 22 and T4 10.9 (normal range 10-23)

Aug 2013 (since taking T4) - 4

Both GP labs range for TSH was between 0.2 - 4.2.

I've been getting on better with my new GP as they've caught the hypoT quite promptly compared to my former GP but what's made me worried if not concerned is that my new GP doesn't know why my TSH is still relatively high (in the normal range but at the top end) despite taking T4. That was why he increased my meds. I'm worried that further on down the line I'll start losing weight and I don't want to do that as I'm petite and still slim.

Like yourself I get pretty bad memory probs on a daily basis and I get tinnitus now and again. What sort of things happens with your brain fog? Do you forget things? I tend to forget things I'm supposed to remember instinctively.

[Hidden in reply to Hidden]

Hi jo853, you might want to post this as a new question so that lots of people can see it. Try and include what meds you are on and at what level. And also if you have had your vits and minerals tested - B12, folate, ferritin/iron and vit D. All very important and can contribute to symptoms like brain fog and tinnitus.

Hampster

[tegz in reply to Hidden]

Jo- apart from other issues your TPOAb is way up. This needs attention as it shows you have autoimmune reactions which need catching quickly.

If you post a new thread again re:TPO , answers will focus better and in more detail than I can give.

Have you got a family history with thyroid probs?

Good that GP is better- it does make life easier