Endo apt nxt week help need some guidance!

Hi I have Hashis and have had symptoms making life diff for few years now, Have over last months trialing with different levo doseages had been on 100g levo for years, then went down to 75 then bck to 100 then 125 but had same sympts with all of them and still having symptoms of pulsating thyroid, pulsating lower back when eaten ,brain fog ,mem loss, fatigue, insomnia ( also involuntary twitches in neck and arms when severly tired), muscle pains, constipation, v dry eyes and throat etc. I did want to ask for T3 testing as never had it done and gp surgery doesnt do it. Was hoping I might get trial on T3 or poss even Armour at some point as at end of rope with these symptpms! I know lots of people have terrible symptoms much worse than mine but really effecting me body and mind.

Has anyone got any advice on what to come armed with to Endo apt, havent seen one in year after op on Parathyroids and Thyroid. This is a new Endo so dont want to be shrugged off! Calcium levels creeping up which was first indicator of Parathyroid probs, before op.

Can anyone shed light on blood tests? High just above end range in MCH,(red blood cell )36pg range ( 26-33pg) and MCV ( size of red blood cells ) 101fl range ( 80-100fl ) Creatinine was raised which online says poss Kidney prob maybe down to certain meds.

Has anyone exp similar probs or sympoms?

Thanks

Corinne x

11 Replies

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  • ...some people have problems converting the T4 you are taking into the ACTIVE thyroid hormone T3 - needed in trillions of cells in the body to make them function. If you were a car - the T4 would be the petrol and the T3 would be the battery and oil - so when the latter two are low then the car doesn't run well and things start to go wrong.

    So the reason the T3 is not tested is possibly due to expense I think ! It is so important though. Look at the main Thyroid UK website about the D102 Gene Test - some people have inherited the gene that prevents good conversion of T4 into T3. T4 and T3 need to be near the top of the ranges for you to feel good and the TSH needs to be 1 or below.

    The Endo cannot argue that your T3 is fine if it has not been tested.....you can pump 300mcg of T4 into the body - but if it is not converting to T3 then it is not helping. T4 is a storage hormone and is called upon when needed.

    Hope all goes well.......... just check out if your Endo deals with Thyroids or is just a Diabetic Consultant.....

  • Hi C. Personal experience suggests that most endos will ask a few questions, and based on the answers and whatever else they pick up dictate next steps - there's relatively few that will engage on a co-operative basis.

    There's no easy answer, and since it depends so much on the endo there's often not that much a patient can do to influence the outcome beyond a certain point. So it becomes a case of doing our best in what's probably going to be a less than ideal scenario. It may or may not deliver what we hope for, but c'est la vie...

    My instincts tend to be to try to get the symptoms clearly on the table. In the hope that it will trigger testing - which at least creates some data points even if it doesn't lead to a diagnosis. If i have anything i strongly feel the need to try i'll have a well reasoned case ready to discuss for that. It's so easy to get intense about stuff, but it risks the doc dropping the shutters on co-operation to play safe.

    It's only a personal view based on hearsay and limited experience, but many seem to fight shy of engaging with issues where treatment may entail the use of T3 and/or more creative, labour and time and symptom led/trouble shooting/exploratory approaches and less than fairly extreme hormonal imbalances - they like to use tests that deliver definitive diagnoses for conditions that are treated using medically well recognised stock protocols so they can't be accused of fiddling about.

    They seem under pressure to stay within budget on e.g. numbers of tests ordered too - which tends i think to block wider ranging screening. Over here anyway.

    The latter seems to occur to the point where many of the more moderate hormonal imbalances that seem implicated in thyroid trouble and hypothyroidism (e.g. high cortisol/chronic stress, or even mid to low range thyroid hormone levels) won't even be diagnosed as illness. My guy is for example sceptical about the saliva based adrenal stress test - on the basis that depending on our situation our blood cortisol levels can be variable enough to make a definitive diagnosis difficult without several repeats.

    This kind of creative/interpretative territory may be more suited to a naturopath.

    I'm no expert and can't advise on your bloods or anything else. (especially as it can be complicated to get well with auto immune issues) It seems to me too however that testing for free T3 and reverse T3 would be very useful as you could well be hypo despite taking lots of T4 - especially since most GPs can't/won't do it. Maybe also your parathyroids and your kidney function. Wonder if anything can be done to take a look at the state of the your thyroid re. the Hashis?

    Personal experience suggests that unless the Hashis is at very early stage/if there's a lot going on by way of auto immune disturbances that by now there may be other issues in play too - gut troubles are common and underly so much.

    T3 was the big breakthrough for me, but work on stuff like food sensitivities/allergies (gluten, milk, flour, sugar, additives, too much coffee and the like can be problematical - and best eliminated), supplementing for various deficiencies (ferritin/B12/D/vit C etc), mind work/meditation (the book 'Full Catstrophe Living' by John Kabat Zinn is a great place to start), chronic stress/high cortisol (i've posted on some naturopathic treatment approaches to this recently), toxicities (mercury from tooth fillings was on the radar again yesterday) etc all helped.

    Most endos (or GPs) don't reach out into fields like these, so there doesn't seem to be much alternative but to take charge of our own path. To get get reading, studying and trialling those treatments that seem both safe and promising - or to hook up with a good naturopath.

    It usually takes persistence, but against that persistence/genuinely taking responsibility for ourselves and our path is usually rewarded - it seems to be the way life works ...

    ian

  • Hi Ian,

    Thanks for your reply and your info really helpful, I am going on gluten free and supp with high vits and mins and the high cortisol has def been issue although previous endo had done nothhing about it, put it done to stress .Will try my new endo and see if I can tiral T3.

    Had blood tests done few weeks ago:

    B12 733 ( 180-800)

    ferritin 227 (25-300)

    glucose 4.5 (3-7.80)

    Folate 17.4 (3-20)

    Creatinine 81 ( 44-80)

    Calcium 2.62 (2.20-2.60)

    corrected Calcium 2.52 (2.20 2.60)

    Bone profile out of all higher test:

    albumin 50 (35-50)

    MCV mean corpusclar volume 101 ( 76-96)

    MCH mean corpusc. haemoglobin 34.8 ( 27-32)

    red blood cell distribution 14.9 % (10-15 %)

    on 75g Levo

    Free T4 16.5 (12-22)

    TSH 0.15 (0.40-4)

    Do you know if anything stands out?

    Thanks

    Corinne x

  • Hi Marz,

    Thanks for your reply, and info I will ask to get the T3 tested and hopefully will shed some light and will check out Thyroid UK site for D102 Gene test.

    Thanks

    Corinne

  • Hi, I have had hashimoto's for years now and juggled the doses between 75/125 never feeling well. Also there's always that nagging feeling maybe more meds would make things better. Then from 75 I switched gradually down. Am now on 50 + adrenal supps and although life will never be 100% again I am ok on 50 most of the time and happy to be taking less levothyroxine .

  • Hi Mikiviki, Thanks for your relpy, I'ts good to know Im not the only one strylling with med's! I don't really expect to be 100% but I would like to see a good difference so that I can hold down a job, recently when getting barley any sleep and feeling rubbish not bieng able to speak words just sounds coming out for few seconds, really embarrasing! I just want to do ordinary daily things nothing extensive!

    Lets hope I can soon x

  • Well, i would like to say 'been there, done that'. But its very hard. I was diagnosed about 14 years ago and am still searching for that something that will make me feel well and i think that applies to most of us especially with hashimoto's.

    Good luck!

  • Hi Corinne, your story is a reflection of my own. I have been diagnosed for 12+ years. Been on levo all that time and never felt well regardless of dosage (ranging from 300 mcg to 125mcg now). I saw an endo two months ago and he agreed to trial me on T3 for 6 months.

    All I can say is I don't ever remember feeling this well. Most Of the hypo symptoms have either disappeared or subsided considerably. I would like an increase as I feel there is still room for improvement but will wait until the trial period is over when I see him again! I am even starting to lose some weight without making any changes to my diet!

    I asked him to please please please help me get better. :-)

    My reasons on why I felt I was an ideal candidate to be trailed on T3 are as follows-: I explained I have never felt well in over 12 years on levo alone, regardless of dose.

    I have hashi's and heard we do better on T3 or T3/T4 combo.

    My mother and 2 of my 3 sisters all have autoimmune disease none are thyroid related.

    I take high doses of vitamins and minerals in hope of helping me feel better.

    Ive gone 100% gluten free as I had a positive coeliacs blood test but negative biopsy and was still suffering with IBS bloating constipation etc, stomach issues feel better now I've gone gluten free. I suffer again if I eat gluten!

    I told him because of this I believed I was not absorbing my meds properly so consequently I felt I was not converting T4 into T3 properly.

    After explains all this I said "could he please prescribe a trial of T3, and give me the opportunity to see if it would give me back my life and health? Thank you!"

    Hope this is helpful to you to ask your endo for a trial too? Get "The Good Endocrinologist" list from Louise here on ThyroidUK and ask your doctor to refer you to one of them. There are NHS Endo's as well as private. ( I know this as mine is on it.)

    Good luck

    Wendy x

  • Hi W3ndy,

    Thanks for your reply, its good to know that your Endo listened to you and you were able to change your meds,sometimes its just to get over the hurdle of Drs to listen to you! and I hope that mine will listen to me and I can get a trial of T3, or T3/T4 . Hopefully as I have Hashi's they might give me stsus of it as getting possible signs of Becehets autoimmune dis.

    Will get the " Good Endo list"

    Thanks

    Corinne x

  • HI again C. I'm sorry, but i'm not much help to interpret blood tests other than thyroid.

    Here's a few links on tests and their interpretation from my list (often picked up from others on forums like this) that might just be of some use:

    amarillomed.com/howto/#Thyroid

    thyroid-info.com/articles/d...

    parathyroid.com/diagnosis.htm

    I think I should have been more positive on endos. Many seem to fit the institutionalised profile described, but there are as Wendy has said a few (especially some younger ones) about that are a lot more patient centred, open minded and ready to try stuff out.

    It was always said that at work we have to manage our boss. Endos are a bit the same I think - they all have their positives/negatives/phobias/interests etc. Getting the best out of a consultation is often a case of walking between the raindrops/avoiding landmines while realising what's available. It's a lot about luck and synchronicity too, it can be so valuable to trip over somebody with the right insight at the right time...

    My personal view is that there's little point beyond a point in arguing for stuff where there is resistance, and best to move elsewhere if it turns out to be on fundamental stuff. It's against that well worth persevering with a basically decent, competent and progressive guy with a few warts when there's room to manoeuvre - perhaps Mr./Ms. Perfect exists, but I haven't found him/her yet ....

    ian

  • Hi Ian,

    Thanks for the links. my apt is with new Endo as my prev one has since left, so will see what he has to say!

    :D

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