Advice please : Long one Had TT Rai Oct 18 Was... - Thyroid UK

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Advice please

paul1979 profile image
13 Replies

Long one

Had TT

Rai Oct 18

Was put up to 200 levo in dec. spent 2 months with anxiety and depression was put in antidepressants

Dropped my dose to 175 and was a lot better

Still tired and gi problems

Endo said I am not converting to T3 very well

Wants to put me on beta blockers to stop anxiety

Then 175 and 200 on alternate days

What u think ?

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paul1979
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13 Replies
SeasideSusie profile image
SeasideSusieRemembering

paul1979

Endo said I am not converting to T3 very well

So if your endo has said that, what does he intend to do about it?

Is he willing to prescribe T3 for you? If not, ask him why not if ye has said you don't convert well.

Have you had vitamins and minerals tested? These need to be optimal for thyroid hormone to work properly and good conversion to take place:

Vit D

B12

Folate

Ferritin

And selenium and zinc are said to help conversion, ask for these to be tested and supplement if levels are low.

paul1979 profile image
paul1979

Hi. I asked about T3 and he said no because it will make my anxiety worse

I am seeing a nutritionist at the mo

Taking Vit d b12 and stomach pills as I have low acid

All the levels are low and I have asked my nutritionist to look at conversion help for my next meeting

SeasideSusie profile image
SeasideSusieRemembering in reply topaul1979

This is how I would have handled that situation

Endo: I asked about T3 and he said no because it will make my anxiety worse

Me: In that case, as you have said I have poor conversion, what do you suggest?

Anxiety is a symptom of hypothyroidism. With these results:

T423.7. 10-21

T3 4.8. 3.5-6.5

you are having symptoms because your FT3 is so low. He should have lowered your Levo and introduced a small amount of T3, and tweak the doses until you find a combination that suits you.

paul1979 profile image
paul1979 in reply toSeasideSusie

I agree but he was not happy to give me T3 and he said gps won’t continue to give it

He has given me beta blockers and wants to raise the T4 dose slowly

I feel like they are treating the symptoms all the time

I am now on 11 tablets per day

m7-cola profile image
m7-cola in reply topaul1979

Beta blockers will also impede your T4 medication. One step forward two steps back! It occurs to me that the endo might give you a private scrip for T3, judging by the comment ‘GP won’t continue’.

SeasideSusie profile image
SeasideSusieRemembering in reply topaul1979

As Nanaedake says, how does he know it will make your anxiety worse.

By increasing your Levo he will raise your already over range FT4 level and you will most likely then make reverse T3 rather than FT3 and be in a worse state than you are now.

Sometimes we have to take things into our own hands. I was in your situation but my stupid endo wanted my suppressed TSH back in range, so he lowered my dose of Levo until it just scraped into the bottom of the range, in doing so he made me extremely ill because my FT3 plummeted to 2.8 (2.8-7.1). I had to give up work in my own business and be looked after for 2 years as I was capable of nothing other than crawling out of bed around noon and sitting on the sofa for the rest of the day.

I ditched the endo, and eventually (although many years later) found this forum and discovered what I needed to do. I now accept my prescription for Levo, take lessl than is prescribed, add my own T3 and do my own monitoring. If I can't dodge their thyroid function test, and I get the usual "your TSH is suppressed, reduce your dose of Levo" I refuse. My GP doesn't know I take T3 as she is governed by the god TSH. My GP doesn't like me, nor I her, but I am in a better place than I would be if I did what she wanted me to do.

Nanaedake profile image
Nanaedake in reply topaul1979

How does the Endo know it will make your anxiety worse? How many other patients has he prescribed T3 to and what happened to them. Where is the evidence? If he prescribes betablockers, if it is propranolol it will reduce conversion to T3. That's likely to make things worse. Betablockers have side effects too, especially if you don't need them for a heart condition. Sounds like the Endo is stabbing in the dark. NHS can overprescribe tons of drugs but can't give us the hormone we are missing. How crazy is that?

Have you got a good ally who can attend apts with you and fight your corner to try T3?

pennyannie profile image
pennyannie

Hey there Paul

A fully functioning thyroid gland would be supporting you daily with approximately -

100 T4 plus 10 T3. T3 being roughly 4 x stronger than T4.

I can only agree with SeasideSusie's comments, it's the logical next more, drop some T4 as you are over range, and not converting, and introduce a little T3 to balance these two hormones out and into the upper quadrants to their relevant ranges.

T3 is vital for brain and cognitive function, without enough T3, my anxiety was worse.

Maybe your oncologist could have " a word " ? :

otherwise suggest you ask to see the Head of the Endocrinology Department.

It reads as though this endo is too scared to do anything proactive and is putting up barriers, that simply don't hold water.

You must be feeling quite unwell, let alone without all this upset, can anyone go with you for additional support, so that you don't feel outnumbered ?

paul1979 profile image
paul1979 in reply topennyannie

Hi. Thanks

I am Exmilitary and can sort this endo out no problem. I just can’t grasp the beta blockers. I have explained I don’t do anxiety

I have been all over the world. Carried and used weapons

You can’t do that job with anxiety

He thinks it’s my cancer causing the anxiety

So sick of the nhs

Nanaedake profile image
Nanaedake in reply topaul1979

Yes, my GP thought it was the thought of cancer causing anxiety too, but I wasn't worried about the cancer aspect, it was becoming non functional that was the problem and then struggling to work. Also the eventual despair when doctors had no sensible solution and wouldn't try giving T3 in addition to T4. I just got stuck on betablockers which didn't resolve the problem but caused side effects.

Stick to your gut knowledge that it isn't the thought of cancer causing anxiety and spell that out to the docs.

I've had friends and family members with all sorts of cancers with worse prognosis than thyroid cancer and they didn't get anxiety so I'm convinced it's hormone imbalance that's the cause.

Everything did eventually balance out but it took years. Many try T3 to see if it helps as nobody wants to struggle on for years.

pennyannie profile image
pennyannie

The endo's is either out of his depth or too worried about his own job should he write the prescription for T3, which is what you now need.

It has to be the latter as he's acknowledged you're not converting the T4 and over range.

It's simple deplorable that the Nhs is in such a state that doctors do not feel able to do the right thing by their patients.

paul1979 profile image
paul1979

Getting bloods done on Monday. After being on 175 for 4 weeks. So I will see we’re I am and then decide what to do

paul1979 profile image
paul1979

I find any pills I take. I get side affects now

We’re I never did before

Even ibuprofen

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