Just a whinge...

[mlig]

Well to cut a long story as short as i can... ive kept off this forum for a few months because i was waiting for an endo appointmnet and i was finding the wait hard..

i have loads of symptoms of under active thyroid. If i look at the list i can literally tick most of the symptoms, and can prove they're not just in my head ive seen the dr and been treated for some of them before i knew they were symptoms.

So i went to gp again at the start of the year, she would only acknowledge my weight and would only offer me orlistat as a solution. I cant lose weight despite trying all the diets. Im 5 stone heavier than i was 6 years ago. Eventually i managed to convince her to test me properly, but when the blood results came back the lab hadnt done some of the tests so i had them done privately too. She acknowledged that some were very low or below the range but wouldnt treat me. She did refer me to an endo though.

I had my endo appointment today and he was the loveliest man. However my gp jad only mentioned my weight in the referral. he said i dont have symptoms because thyroid symptoms are too broad and can be explained by many things. He only looked at tsh and nothing else. His conclusion was that some things just cant be explained and we should stop looking for a cause and just focus on a solution to my weight problems, and that i should go for bariatric surgery.

This is despite me explaining about how desperately tired i am all the time, and all.of my other symptoms, he could see my balding eyebrows because you cant miss them.but i pointed them out anyway, i explained how i just need my life back. I practically begged him to help me. I really need my life back. My kids and husband really just need me back..

So im left with 4 choices, but they arent really choices..

1. I try other gps to try to get one to prescribe me a trial dose, but that wont work because they wont undermine an endo

2. I try to find a private endo who is sympathetic, but this really isnt an option because i cant afford to keep up with a private dr and i can't afford private prescriptions. Also i dont know that i have years of fighting in me

3. I order privately from america, but this isnt an option because it scares me if i cant keep up with it, and again its an option i cant really afford just now..

4. I just go with what the endo said today, and pursue the bariatric surgery. I really didnt want to do this but i jist cant see another way. I also cant see it helping me because even if it does help.me lose weight thats only one of many symptoms i have. And im not convinced id lose weight even with that.

Ive had enough now and i'm sick of noone wanting to help. And im feeling really sorry for myself..

If you got to the end of this then thank you for reading xx

[Jazzw]

I wouldn't touch barbaric surgery if you paid me a million pounds to have it done. It isn't the magic solution that so many doctors seem to believe it is.

You said in an earlier post that your B12 was low. Exactly how low was it? I'm wondering if pernicious anaemia might be the problem. Or gluten intolerance. Ever been tested for Coeliac Disease?

So sorry it was such a frustrating appointment xx

[Jazzw in reply to Jazzw]

I meant "bariatric" but my iPad's spellcheck - oh so wise spellcheck - changed it to "barbaric". Which is how I feel about it anyway...

[mlig in reply to Jazzw]

Yeah im.not keen on the idea either! Ive been tested for coeliac and its negative but im generally gluten free anyway, i was diagnosed officially with gluten intolerance years ago, i can be hit and miss with following it but have done for the bulk of the last year. Cut out dairy too.

B12 i cant hinestly remember my results and dont have them to hand but it was borderline on the gps range and significantly low on all the advisory pages so ive been taking b12. On the gps tests my vitamin d was low as well, below their range but she wouldnt treat me so ive been taking that too

[Jazzw in reply to mlig]

You know that with gluten intolerance that even a little tiny bit can set you back for months? The fact that your ferritin and B12 was low points to you having absorption problems, which could well be due to the gluten damaging your innards. It's not like you can say, "Oh s*d, I'll have a slice of your birthday cake, it won't hurt just this once." Cos it does, it really does. But you probably do know that, and I'll just be making you grumpy with me if I go on...

How much B12 are you taking? And have you started Vit D? Being low in any of these can leave you feeling lousy.

[SeasideSusie Remembering in reply to Jazzw]

Jazzw I thought you'd written barbaric on purpose, and I thought how apt!

[bluebug]

If your vitamin and mineral levels aren't optimal barbaric surgery is very likely to make it worse.

I suggest you self supplement and get them to optimal levels. As even if you took thyroid hormones without optimal nutrients they won't work effectively. You also definitely won't lose weight feeling terrible due to malnutrition.

Some people on here take more expensive supplements but it's up to you what to take.

Personally I think 1 is a waste of time. Leaving you with 2-4 or self supplementing with something else.

[humanbean]

As far as I'm aware, orlistat is something which prevents your body from digesting fats. As a side effect it gives lots of people very smelly, oily, fatty diarrhoea.

Reducing fat is not a healthy thing to do. The body needs fats (of certain kinds) to be healthy. You would be better off reducing your simpler carbs and refined sugars.

Can you tell us what kind of diet you usually eat? And how much exercise do you do, and of what type?

You say you paid privately to have some tests done. Can you post the results of those tests, including the units of measurement and the reference ranges. We can make helpful remarks - which is something all your doctors seem to be incapable of doing.

When you listed your options you missed one out. You can self-treat, and you don't have to order Armour Thyroid from the USA. It doesn't have to cost an absolute fortune. And you don't need your doctor's permission.

Supplements - these can easily be sourced on Amazon, iherb, and other supplement sites. You need to get your nutrient levels up to optimal as soon as possible. You will be amazed at how much better you will feel. And when you go on thyroid meds they will work much better with decent levels of minerals and vitamins.

Thyroid meds - when people think of treating themselves they automatically think of Armour Thyroid. I don't know why. Armour Thyroid is an NDT product (a natural dessicated thyroid) and it is the most expensive one in the world. There are several other makes and brands of NDT available for substantially less money. They are available from the USA, Canada, and Thailand. The Thai brands are extremely good value for money.

It is also possible to buy levothyroxine (T4) online, and also T3.

Since you have never taken thyroid meds I would suggest you try levothyroxine first. It suits about 85% of people who take it, your doctor will like it better, and he/she will do better interpreting the results of any testing. Many of the people who come here are those (like yourself) who can't get a diagnosis. But once they start on levo many of them do very well on it.

You aren't at the end of the road yet. I'd say you are only at the start of it. And you can improve your health. Don't, whatever you do, agree to bariatric surgery!

[CarpaBob]

What a ridiculous suggestion, bariatric surgery is a serious life changing procedure. It certainly isn't the easy fix it's advertised to be and it will definitely cause you to have further deficiencies.

Firstly the gp should be treating the vit d if it's below the lab range. Would you consider moving to a different gp surgery and asking for a second opinion from another endocrinologist. You could also write to your current gp outlining all of your symptoms and concerns and ask for it to be recorded on your file ( I have just done this myself) I would then consider making a complaint to NHS England.

[MichelleBerko]

Hi

If you can afford it, buy a home adrenal check as they can make you very tired for part of the day, then keep you awake all night. Get the four point saliva test, you spit in the tubes and send them off - really easy. Then take supplements as per the results.

Secondly, I really highly recommend starting NDT, it's not scary and there are some great support groups on Facebook to help and advise. I find the best educated are FTPO (for thyroid patients only)

You'll get help on there with dosing, supplements and general hand holding.

Good luck

[thyr01d]

Dear mlg, what a horrid position you are in now, I feel very sorry for you, but please keep going, we are here to encourage you. I would suggest you ask Marz for advice about the B12.

[Bluedragon]

Hi, as everyone says- the surgery will not help things but will make worse. Your GP sounds rubbish! Vit D should be at about 100, B12 over 500 if not supplementing and over 1500 if you are, imo!

What were your results? Be good to know to help you further. Difficult to argue for meds if supplementing as results then become slewed. B12d and thyroid symptoms overlap.

FYI, I self inject B12 and buy Thai NDT easily online.

[janeb15]

I find it unbelievable that the endo should have suggested that they stop looking for the causes of your problems! Of course you need to look for the causes. You want answers and putting sticking plasters over the problem will not solve it. It wasn't until we started looking for the causes of my daughter's deteriorating health (including weight gain) that we eventually (after 20+ years of looking) found answers, and I'm pleased to say she is now recovering. We followed the thyroid route for many years, not realising that thyroid problems were merely a symptom of a group of serious infections causing multiple systemic failures that had not been addressed since childhood (she is now 36). We had to travel to the USA for answers and the skill of the doctor we saw was a revelation! PM me if I can send you more details and links which are too numerous to post here. Jane x

[fibrolinda]

Some great advice please take it love... no surgery.

Post all your test results on here with ranges and pp. Who know will give you real knowledgeable advice. I will not write what I think of your gp and endo😑

[mlig]

Thank you all for your comments and support, i really appreciate it xx

Sorry im just replying but uve not been able to get on all day, ill reply to specific bits and with my previous results as soon as i get the kids down in half an hour xx

[silverfox7]

Ditch that endo and put yourself first, look after number 1! I have been on Levo for years but knew I wasnt converting well the T4 in the Levo to the active T3. So I was struggling! I'd been seeing Dr Skinber and when I got a copy of my notes after his death then I saw he had asked my GP to give me either NTD or add T3. She hadn't and said she had never heard from him and yet my notes included his letters and her reply! So I was on my own and not feeling good. I'd always taken some supplements but now decided to be more proactive in that direction, I boosted the doses and added in others and after 6 months I had lost half a stone without even trying. I then saw an offer on fb for food intolerance testing cheap. Was sceptical but he discovered my know allergies and some I thought I was intolerant to and many more! I was just about to go on a cruise so thought ideal time to try different foods etc and lost another half stone but more importantly I was a better shape! I must be the only person having been in a cruise and lost weight! The vitamins don't work over time but well worth trying and you need good levels for your thyroid to work better. We are what we eat and I believe that now!