Feel awfulwant to try ndt: Any help would be... - Thyroid UK

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Feel awfulwant to try ndt

shazbaz111 profile image
18 Replies

Any help would be greatly appreciated

I have hashimotos and have taken thyroxine for 5 years.

I recently started having extreme panic attacks and anxiety, headaches, change of pressure in ears and my favorite cuppa tasted awful.Went to gp tried to prescribe me anti depressant , felt so awful that I tried them and if anything heightened my anxiety.

Did some research and estrogen dominance seemed to be the answer went back and showed doc my research and she prescribed me pop (progesterone only pill which has stopped the panic /anxiety

3rd month of taking the progesterone and I'm thinking my thyroid is the problem to as I really am so tired, cold

Doc says my thyroid is fine (last test) absolutely will not prescribe me natural dessicated thyroid .

Have tried to find on Google search where I can get ndt but no luck.

Any help would be so appreciated

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18 Replies
shaws profile image
shawsAdministrator

I'm sorry you are feeling so bad. If you can get a print-out with the ranges of your latest blood tests for thyroid hormones, with the ranges, put them on a new post if you don't have them to hand now.

Did your doctor check B12, Vit D, iron, ferritin and folate too. I not, ask for these to be done.

shazbaz111 profile image
shazbaz111 in reply toshaws

My last test at the Queen Elizabeth hospital were

TSH 2.26

FREE THYROXINE 17.2

shazbaz111 profile image
shazbaz111 in reply toshazbaz111

Tsh 2.26 range 0.30 -4.50

Free thyroxine 17.2 range 10. 0 -22.0

shaws profile image
shawsAdministrator in reply toshazbaz111

It's good if ranges are stated but your TSH should be around 1 or lower. email louise.warvill@thyroiduk.org.uk and ask for a copy of Dr Toft's Pulse Online article. Highlight question 6 which will inform your GP how low you TSH can go (he even mentions adding some T3) but ignore his very last sentence as that's what most of them really think anyway. Lyn Mynott of Thyroiduk did reprimand Dr Toft for that sentence. Ask him to give you some T3 to add to your levo.

shazbaz111 profile image
shazbaz111 in reply toshaws

Thankyou so much.

Do you think a gp who when asked about ndt said she has never and would never prescribe it would take much notice of what doctor Toft's report says?

I have found a company that sells raw thyroid but I'm worried about buying from abroad.

shaws profile image
shawsAdministrator in reply toshazbaz111

No - as Dr Toft doesn't believe in NDT either I understand.

I would approach your GP first with Dr T's article and go from there. Some doctors ignore Dr T's article and he was President of the BTA.

I would wait a while before raw thyroid route. There are other hormones with a good history behind them.

Clutter profile image
Clutter

Shazbazz111, NDT isn't licensed for UK use and is rarely prescribed on NHS. Your GP could prescribe a higher dose Levothyroxine though. Most people will be optimally medicated when TSH is 1.0 or lower. Read Treatment Options in thyroiduk.org.uk/tuk/about_...

shazbaz111 profile image
shazbaz111 in reply toClutter

Thankyou, my endocrinologist at QE

Said my thyroid was at a optimum level, perfect

I questioned the 4 different endo's at each visit saying that I still felt unwell, sometimes very much so.

After my last visit I asked to be disharged as I felt I was banging my head against a brick wall.

That was the last bloods I had, I'm due for my next blood test this week.

Clutter profile image
Clutter in reply toshazbaz111

Shazbazz111, if levels were perfect you would be symptom-free! Keeping TSH mid range is why so many patients continue to feel unwell.

Jazzw profile image
Jazzw

You very probably don't need NDT - you just need a raise in levothyroxine to get your TSH under 1.0. How much Levo are you taking?

shazbaz111 profile image
shazbaz111

Hi

I have been on 125mg of thyroxine for last 5 years

quiet-hawk-5989 profile image
quiet-hawk-5989

Sorry Jazzw I beg to differ since the latest research from the US (where NDT is more readily available) shows that people with Hashimotos do better on NDT in 90% of the cases.

I am one of those cases since, like you shazbaz111 I was extremely ill on Levo which backed up in my system since I couldn't convert the T4 to useable T3 and I became quite toxic. It seems to me you are in a similar position. I get Armour on the NHS though I had to threated reporting my old practice to the MP in order to get it and used all the ThyroidUK evidence at the time (15 years ago). It is unlicenced so they don't have to prescribe it. I get the feeling most are terribly frightened of it as they don't understand it. So you may end up self prescribing.

I found Dr Bernard Willis very helpful in advising about dose of NDT (as much as you want till you feel better up to 5 grains)!!!! Not scared at all...

shazbaz111 profile image
shazbaz111 in reply toquiet-hawk-5989

Thankyou so much.

As I read your reply I burst into tears.

Just sat here try5to log in to my online banking and can't remember my password which was my husbands birthday

Feels that no matter how you try to put on a brave face everything inside is failing.

I honestly feel like such a hypochondriac when I go to see my gp and dare mention that maybe my anxiety etc (which has calmed down since prescribed the pop)

Maybe down to my thyroid

Thankyou gor all your help.

I'm going to get myself better using ndt.

My only worry is should I tell my gp and should I carry on taking my progesterone pill ?

shazbaz111 profile image
shazbaz111 in reply toquiet-hawk-5989

I'm not sure what to order, should I buy t3 cytomel or thyroid s a combination

Sorry to be a pain

Fifhia profile image
Fifhia

Hi Shazbaz111, have you tried NDT (bovine source) from nutri advanced? I think it's worth to try. It works for me really well.

Regards

shazbaz111 profile image
shazbaz111 in reply toFifhia

Thanks for the suggestion

Does that contact and t4

shazbaz111 profile image
shazbaz111 in reply toshazbaz111

Sorry does that contain t3 and t4

quiet-hawk-5989 profile image
quiet-hawk-5989

Any natural thyroid product will contain not only T3 and T4 T1 and T2 also so that's a great added bonus since we need all four.

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