after 2 years waiting nightmare endo appointment

[mythreecats]

please can anyone give advice on what i could ask my gp to do next

ive posted before...to shorten things and this is quite condensed....started levo 4 years ago after significant what i believe to be hypo symptoms...my tsh was 4.7. i also started b12 supplements at same time. to cut a long story last 4 years ive not improved on levo...in fact going up to 100mg on two occasions made me very ill...BUT NOT as you would expect with anxiety etc but seemingly more hypo symptoms...slower more extrem lethargy and muscle tension....im currently moving downwards and now a week into 50 mg being on 75 a good while. a year ago found i was ceoliac and am putting this into equation...However im so upset as a brief appointment with an endo had her telling me my symptoms were not thyroid related...MY belief is this....i DO need a thyroid med but i believe i cant use levothyroxine well for whatever reason...my argument for this is instead of having more energy the higher i go up i feel poisioned and SLOWER.....she did not test for RT3...im waiting for cortisol...ive been working with my gp to make sure vits are ok, iron folate etc etc....she DID not listen to me as a person but will cause so much damage...i dont want to live a miserable life because an endo did not listen.

At 75 mg levo my recent results were TSH 1.46 T4 ..19 T3.. 4.2 .In her letter she mentioned no ranges but my march results at GPs after 10 weeks of 100 levo were TSH 0.72 (0.27 -4.2) T4 18 (12-22) T34.3 (3.1-6.8)....the T4 and T3 are always usually around this level.

I want to tell my gp on Mon i disagree with the endo and she did not listen to me. She,s been great but the damage this endo can do is mindblowing as i will then i feel be looked at differently now. I am going to try to speak to this endo and ask her would she do a trial of T3 and if not then I have nowhere to go with this except to ask for another opinion...Folks never tell an endo you have stress in your life....I think its almost medieval to jump onto this obvious reason.......does anyone think im reasonable asking for a trial of T3. I first presented with hypo symptoms and was told my thyroid had become borderline...all i know is that i had been becoming more and more ill for months with letheragy, feeling frozen, muscle issues etc etc. She has suggested to my gp to wean me off levo....where will i end up?...at the begginning?...IF i genuinely need a thyroid med then my tsh is going to show this again and IM then having an untreated illness, prob like now as i belive levo is not working but that doesent mean i dont need anything and be left to flounder. She said i had subclinical hypothyroidism...but the laugh there is that i had so many symptoms which is why i saw my GP in the first place!...anyone have suggestions ? does anyone feel im right about the T3 ? any help welcome.. im in a state about it all........im so tired of feeling ill.....thanks

[greygoose]

She sounds pretty average to me. I've read about so many like her, on here. Diabetes specialists who only vaguely know where the thyroid is, but no idea what it's all about. They are pretty much all dangerous and I often suggest on here that it's really not worth pressing to see an endo unless you know the endo you going to see, and know that s/he knows something about thyroid. It must have been a very destressing appointment, I can imagine. I've had some of those myself. It makes you feel you can't trust your own judgement and you're losing your mind. It's called Gaslighting, and seems to be a favourite weapon amongst endos.

I agree with you that you need T3. You do not convert well. So, it's not actually that the levo doesn't work for you. Pretty sure it does do some things, but your body cannot convert it to T3, the active hormone. This is pretty common amongst hypos.

There can be many reasons for poor conversion. For example, do you have Hashi's? Hashi's people often don't convert well. Or it could be low nutrients: have you had vit D, vit B12, folate and ferritin tested? Do you take vit C and magnesium? It could be low/high cortisol, but if the test come back out of line, it's doubtful this endo would know what to do about it. So, do post the results here, when you get them.

Don't fret about not getting the rT3 tested. It wouldn't give you much in the way of useful information, anyway. It would tell you if your rT3 was above range, yes, but wouldn't tell you why. And, unless you know why, you can't do anything about it - and there are many, many reasons for high rT3. But high rT3 is not something to worry about, anyway.

So, your next step has to be back to your GP, and explain to him all about the useless endo, and hope and pray that he has the sense to understand why she's wrong. He cannot prescribe T3 himself, under the present crazy rules and regulations, but he could agree to monitor you if you get your own. But, do ask him to test nutrients and try and improve any that are sub-optimal, see if that helps.

[mythreecats in reply to greygoose]

thank you so much for that reply greygoose.....in my heart i know they're wrong. And its been distressing yes and im frightened of giving in and not fighting to get well as im so fed up with it all. I think ive covered all the vits and minerals this last 2 year especially and since the celiac diagnosis am also aware some early symptoms may have been deficiencys in b12 e.g....i was low normal, but the test only tells whats in the blood and not what im getting. All i know is i couldent remember which way to drive round a roundabout my memory had deteriorated...........i always wondered what would have happened if hadnt started levo as the memory issues and pins and needles faded when i started the sublingual b12.. ..same time as starting 25 levo!......nothing like murking the waters...

I don't do Vit C or magnesium so will supplement those thanks. Im only into 11 days on the 50 mg.....If, and i say if, i am able to try t3 should i stick to this to set the scene for the addition of t3?.....and is it possible to feel a bit better on a lower dose if someone isn't converting? Ive been told i didn't have antibodies.. However ive read that testing once isent always accurate. ....I asked the endo if she would ever give T3 to anyone on walking out the door...she said is someone had a high T4 and low T3 she would, but i didnt fit the bill. My t3 has always been in bottom third no matter how much levo i take. Im going to be brave and try to ask her straight to give t3.....then i know ive tried, but since she dosent think my symptoms are thyroid related its a joke even asking this of her. Again thankyou so much greygoose. I feel quite alone in all this to be honest . I know illnesses like thyroid can be difficult for gps etc but when noone is listening its a nitemare. Ive lost faith in most drs now because if its not an easy fix they are useless, but life destroying.

[greygoose in reply to mythreecats]

So, the only thing you're supplementing is B12? Are you taking a B complex with it? And you've had vit D, folate and ferritin tested and they were all good - i.e. folate over mid-range and vit D and ferritin around 100?

I very much doubt reducing your dose will make you feel better, given that your FT4 wasn't at the top of the range, because when you lower the T4, the T3 will drop, as well. But, if you do manage to get hold of T3 (and you can buy it on-line and self-treat with it), staying on 50 mcg levo should be good.

Testing antibodies just once will not give you a definitive answer because antibodies fluctuate. Plus there are two types of Hashi's antibodies and the NHS only tests one - TPO and Tg antibodies should both be tested. Plus it's possible to have Hashi's without ever having high antibodies.

By the sound of your endo, I doubt she would ever give anyone T3, no matter what their results, because it sounds as if she just doesn't care. I do wonder, though, exactly what she means by 'high' T4 and 'low' T3, because that description would fit your results.

But, you're not alone, you have all of us.

[mythreecats in reply to greygoose]

thanks again Greygoose....im supplementing b12 but not B's but am starting to take a well woman with a good mix of vits including the b's? i am ok ferritin and folate but i waited all this time for vit D to be tested and it has come back as 80....the lovely letter did not state ranges( imagine that). I am going backwards with the levo dose on the assumption that since im possibly not converting well, there may be less of the T4 floating around to be toxic, but honestly I'll just have to see. At the very least as you said, it could help with starting on T3. I am going to have to ask loads about that another time. Self sourcing stuff scares me and also im worried about the expense and where i can get stuff safely. And yes, the more i look at my results technically i do "fit" the bill with the T4 and T3 ratio. The letter also states I should wean myself off b12 because its high....the way i want it!...I think you sum it up well when you say she doesent care......After 2 minutes i knew that consultation was doomed....She barely looked at me and was as brisk and dour and really made me feel like i shouldent have been there..... . Im hoping to have a cortisol test monday( she forgot to give me the request form on leaving the consult 2 weeks ago) I'll post my results. ..............ta again

[greygoose in reply to mythreecats]

I would strongly advise against the well-woman multi for several reasons:

* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.

* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.

* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.

* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc.

* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.

* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.

You would be far better off getting a good B complex. And taking your supplements individually, according to your needs. Buying multi's of any kind is just throwing money down the drain.

I am going backwards with the levo dose on the assumption that since im possibly not converting well, there may be less of the T4 floating around to be toxic

T4 doesn't become toxic. It doesn't stay in the system forever if it doesn't get converted, it has a half-life of 7 days, so is constantly replenished to keep a steady level. If you are referring to rT3, I don't think your FT4 is high enough to convert to excess rT3 - which isn't toxic, anyway.

Self sourcing stuff scares me

No need to be scared if you buy from a source recommended by someone on here. It will be perfectly safe.

[mythreecats in reply to greygoose]

great advice....i was uneasy with the vitamin complex having iron as ive always read it should be taken separately....is there anything real out there? (sigh)...i'll follow your advice greygoose and do them separately. Maybe the vits need a tweaking after all . Regarding the toxic issue, all i know is that on two occassions i rose the dose to 100 it was hell. The first time not knowing i was celiac. Something happened, and with each passing week on that dose i became more lethargic, more slow , more muscle tension etc. I dident feel "me". Murking the water again on reducing back to 75 levo my gp also started me on an iron supplement the same time............. 4 weeks later i was nearly running up the stairs.......then slowly regressed.

The reason we went to 100 levo again in jan this year was i felt i had addressed the vitamins etc and been gluten free 9 months. However the same happened again. Horrible 10 weeks of getting more ill......this time, going back to 75 my muscle tension has remained, and my energy just dissappears....maybe our clinical symptoms need time to adjust to a new dose , ....im apprehensive about going to 50 but i'll see where it takes me. Thanks for the vitamin advice. Im glad i dident buy loads of the well woman

[greygoose in reply to mythreecats]

Well, it's all trial and error. We cannot know in advance what is going to help us, we just have to try.

[silverfox7]

I've reversed mine by testing my vits etc and supplementing. It helps with conversion and can also help with many symptoms as well that can be down to low levels and it helps our general health as well. Be aware though it's not a quick fix depending how low things are but as you supplement you will start to feel a difference. When you get results then post on hear, they need to be optimal d not just in range. If you need to supplement, a lot of us do, then add in new onesat fortnightly intervals. Nothing worse starting off with several and then find something upsetting you but which one? Once optimal you may be able to find a main ten every dose to keep it there.

[mythreecats in reply to silverfox7]

thanks for the reply silver fox. i posted on here about a year or so on levothyroxine as i was struggleing....see posts......I was told advice about getting vit d, folate, b12,and iron all optimal which i have been doing with the help of my gp who has been good at testing these...except vit d as here in northern ireland we dont test for that ! sigh. The awful endo i recently saw did this at my request....it was 80 , but she did not even write a range on the letter to me or the one sent to my Gp.... I am supplementing vit d still as well as the above mentioned, but i think that is probably a bit low. As greygoose wrote there are also others i should be tweaking and to stay away from multivitamins. I have tried hard with the vitamins and to be honest Im getting worse in many ways. Im due to have a blood cortisol test on monday.....apparently that can wreak havoc if too low or high but what does it actually mean if its out of kilt? Ill post the results when i get them although ive read a 24 hour saliva test is a better way of testing , bit i could be wrong. Thanks for the advice silverfox. Im glad you're feeling ok

[mythreecats in reply to silverfox7]

btw......when you say "reversed"do you mean being hypothyroid?