Frustrated for lack of doctors' action!

[doe333]

Sent to endocronologist -- nothing much said and no new meds. Frustrated because my energy level is 0 and I'm a Type A person. No oxygen in legs when I walk or go up stairs. Want to sleep all the time. Have to fast to lose weight, which was made worse by Entocort for Crohn's which I am now off of, but nothing has changed.

[SlowDragon Administrator]

Also do you know if you have high thyroid antibodies? TPO and TG - have these both been checked? If either or both are high this means Hashimoto's -autoimmune thyroid. The most common cause of being hypo.

Crohns is also autoimmune too I think. Immune diseases often "hunt in packs". Meaning, if you have one, then more likely to have another.

If Hashimoto's, then many find a gluten free diet can help. Have you been tested for coeliacs? Even if this is negative, giving up gluten can lower thyroid antibodies and reduce symptoms.

If you read posts on here you will see, that many of us, like you, have struggled to get appropriate treatment (or empathy or understanding) from many medics,

You'll also learn a lot about how important nutrition, vitamins and minerals are.

[shaws Administrator]

Welcome to our forum doe333. There's no info in your Profile, i.e. when diagnosed - with what i.e hashimotos, hypothyroidism. Dose of thyroid hormones. Do you have or can you get a copy of your most recent results from the surgery, with the ranges (ranges are important as labs differ). Post them on a new question if you don't have them today.

Doctors would seem to be the least informed about how to treat patients when they don't feel better on levo. However, if you've only recently been diagnosed it does take a while to get to an optimum of hormones, particularly if the doctors don't take into account our symptoms (don't appear to know them anyway) so we have to read and learn to take our health into our own hands.

Many on the forum have recovered their health by doing so.

(I am not medically qualified - only have my own experience with being undiagnosed hypothyroid and then the long road to good health).

[doe333 in reply to shaws]

for some reason stuff isn't staying o n profile even with save. maybe i'll get up energy enough to do it again soon. antibodies are all bad. T3 T4 bad, folate good. ferritin border line

[shaws Administrator in reply to doe333]

I don't know why there's a hiccup with Profiles as someone else said that too. If you click on the help button and send a message to HU who should look into the matter.

[doe333 in reply to shaws]

thanks

[doe333]

I've been on synthroid or levothyroxine for 40 some years. Auto immune diseases I have are crohns, gout, arthritis, both kind, onlyone kidney due to cancer some 15 years ago. Doctor I had out of school 3 yrs (I'm in HMO) and new one coming in out of school 2 years) and they can't seem to find a way to balance everything -- and my personal opinion is that if we get the thyroid problem solved, some of the other will go away. I am developing blood pressure problems--not much higher than normal except under stress (125/78/80 and occasionaloly 167/74/90 -- a PA upped my 25mg metoprolol to 100 mg and my bp went off the wall except pusle was 55 and 60. So I dropped meds back to 50mg and am running pretty steady at 117/78/90.

[Marz in reply to doe333]

Hi doe333 - I too have Hashimotos and Crohns - so I think it is important to establish if you have auto-immune thyroiditis - Hashimotos. So do post all your latest results with ranges - only then can people begin to make suggestions.

You could have private testing done through Thyroid UK ....

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

Bundle 11 I think is the one people suggest here which will also cover the vits and minerals suggested by rfu123.

Raised blood pressure is usually a symptom of something else going on in the body. I recently read a research paper which suggested blood pressure tablets block the T3 receptors in the heart - which seems to me not to be a good idea !

Have you considered going gluten free ? It could help reduce inflammation in the gut - which can affect almost any part of the body. It could certainly help your arthritis.

What other medications are you taking ?

[doe333 in reply to Marz]

In February T3free was 2.2L and now is1.8L; Hemoglobin 6.4H and now is 5.7H; T4free 1.2 and now is 1.4; and TSH 1.45 and now is 2.74. Meds I'm taking: Just coming off of Entocort ( tough withdrawal), levothyroxine .0888; metoprolol 50mg (up from 25mg) allopurinol 350mg; tylenol as needed for pain.

[Marz in reply to doe333]

No result for thyroid anti-bodies - you need to have them tested - Anti-TPO and anti-Tg

Have you considered going gluten free ?

[doe333 in reply to Marz]

i've been totally free several times, now, 98% free, occasionally I have some oats.

[Marz in reply to doe333]

You can buy Gluten Free Oats - well I can here in Crete - so am sure you will be able to in the UK.

So just the thyroid anti-bodies needs testing then ....

[Hidden in reply to Marz]

"I recently read a research paper which suggested blood pressure tablets block the T3 receptors in the heart - which seems to me not to be a good idea !"

I think, from something read on this forum (can't remember where) that this could be a problem if you are on Beta-blockers. There are other kinds of BP tablets. I am on something else (a low dose water tablet)

Hope that helps, Doe. Check with your pharmacist - they are easier to see than doctors and of course specialise on things like drug interactions

[Marz in reply to Hidden]

You replied to me Marz - and not to doe333 - so have now tagged the member !

[Lizziegannon52]

I have Hasimotos , but same here waste of time going to see the endocrinologist . Told me that have to wait for thyroid to change , yet I have all the symptoms that comes with Hasimotos

[shaws Administrator in reply to Lizziegannon52]

If you email [e-mail] and ask for a copy of the Pulse Online article by Dr Toft (ex President of the BTA) and he says if the person has antibodies they should have levothyroxine.

[Lizziegannon52 in reply to shaws]

Thanks , i will do that , great 😀

[Lizziegannon52 in reply to shaws]

Hi I just sent the email to Louise

Thank you