Still very unwell: Hi everyone, I hope you are... - Thyroid UK

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Still very unwell

Booblet profile image
19 Replies

Hi everyone,

I hope you are all feeling ok ish? Well, I am still quite unwell

I saw Dr Peatfield a year ago: I have been taking:

* NAX (x 2 per day for sluggish Adrenal gland..)

* Natural Thyroid (Thyroid S from Thailand) for under-active thyroid - my last TSH was 2.4

*B12 injections x one every 8 wks (GP), AND x two per week - self administrating. ( B12 results were quite good - well into the top of the range )

*Vit C (2000 grams)......

*Q10 200 mg for energy

Iron tablets - one per day to keep my level up.......I was constantly suffering from Anemia (Ferratin and Iron level results: again about middle to high range)

**I have also been taking Venlafaxine 225 mg per day. The problem is that I have been taking them for 15 yrs. I felt so awful - went to see GP who said that there is a chance that I could be immuned to them...she gave me and extra 37.5 mg.....that was 3 months ago***

Apologies for being a bit fague with test results; I have not got them to hand, however, what I have stated are a very good indicator.

***One massive problem I have is the menopause: I am 56 yrs old. I have been going through the menopause for the last 7 years......its awful. The worst is the PMT ( I really don't have periods now, but, there is a very, very slight loss of blood....each month). BUT I am like a demented woman...I cry all the time, I am so very depressed, anxious, not sleeping, terrible mood swings......ect......ect..

**I am sure that there is some sort of correlation between these dreadful menopausal symptoms and adrenal fatigue, b12 deficiency, low ferritin and iron levels......under-active thyroid and allergies --I suffer from Eczema, hay fever and many other allergies.

ANYWAY, I don't know what to do anymore, I have noticed my eyebrows are nearly non -existent.....I am still very tired, mood swings, depressed, not sleeping (The not sleeping seems to be worse since I have been taking NAX??)....Although my Arthritis is a touch better??

Please can somebody help??

Kind regards,

Booblet

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19 Replies

What time of day do you take NAX? Worth bearing in mind that not everyone gets on with them. Really worth obtaining copies of test results from your surgery, you're legally entitled to them.

Sorry but don't know what Venlafaxine is.

Marz profile image
Marz in reply to

It's an anti-depressant..... just looked it up.

Booblet profile image
Booblet in reply to Marz

Apologies, yes your right, Venlafaxine is an anti-depressant.

Clutter profile image
Clutter

Booblet, most people on NDT feel well with TSH <1.0 with FT3 in the top third of range. I would increase Thyroid-S to 1.5 to 2 grains in half grain increments at 2 weekly intervals.

If NAX keeps you awake perhaps you could take a lower dose or switch to Nutri Adrenal.

___________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Booblet profile image
Booblet in reply to Clutter

Hi Clutter,

Thanks for your reply.  I agree with you totally regarding my TSH level.  Not had FT3 done....Will have to try and ask GP???? 

Booblet

Booblet profile image
Booblet in reply to Clutter

Hi, thanks for your reply;

I am taking two grains per day of Thyroid s.......I am right in saying that this is = to: 2 grains??  I think I do need T3.  But need to have test first.

Ollybear

Clutter profile image
Clutter in reply to Booblet

Booblet,

1 tablet of Thyroid-S is 1 grain.  There is 38mcg T4 and 9mcg T3 in one grain Thyroid-S.

shaws profile image
shawsAdministrator

I couldn't take NAX I felt much worse. If you've been taking an anti-depressant for 15 years, I wonder if you were hypothyroid then but undiagnosed?

Maybe instead of increasing your anti-d I think the addition of T3 would be more beneficial as some psychiatrists use T3 for their patients. When hypothyroid we need T3 (which you are now getting in your NDT) but maybe not sufficient yet. As Clutter suggests an increase in your NDT might help enormously.

I am sorry you are feeling so bad and it comes as a surprise to us to be taking medication and feeling worse. Yet the doctors seem to be the last people to know what to do.

I hope you will feel better soon.

Booblet profile image
Booblet in reply to shaws

Hi,

Thanks for your reply.  I am sure that I was "Hypothyroid" 15 yrs ago.....before the onset of taking Venlafaxine (anti-depressents) in which is one of your suggestions:

 I remember going to see my GP on numerous occasions feeling so poorly.  And you've guessed it........had my TSH level tested and it was nearly always a boarder line reading or just above the level (which would make me under-active thyroid).

Unfortunetly,  had not heard of this wonderful sight, hence, no related knowledge at the time.

**I am at present taking 2 x tabs of Thyroid s........does that  equate to 2 x grains?  I am sorry but don't understand the equation relation.

I do however, have a gut feeling that I should be increasing my T3.

Booblet

shaws profile image
shawsAdministrator in reply to Booblet

We rely on our doctors very much. We expect them to know the very basics but if we are worse than before and develop other symptoms we don't know which way to turn because we don't expect the meds to make us worse.

Your two tablets are 1 grain each = 2 grains. Even though I understand they're marked 60 or 65 it can throw some people off.  1 gr. is equal to between 75 and 100mcg levo (due to the effect as every person is different).

i.e. if you were on 100mcg of levo that would mean you'd take 1 gr. of NDT to begin with. If never on thyroid hormones, you'd start at a much smaller dose - 1/2 gr.

If you feel you need an increase, do so and you can always drop back to the previous dose if you feel the need. The normal way was to increase by 1/4 to 1/2 tablet every two weeks till you felt well.

P.S I put up a post yesterday about anti-d's which you might like to read. Just click on my name and it should show my posts. I think the wheels are beginning to turn back now.

fibrolinda profile image
fibrolinda

far far from an expert but what dose thyriod s are you taking? It sounds like you are very undermedicated. What are your t4 t3 results? It would be a big help to the experts if you post them. Have you done the saliva test for cortisol to see how your adrenals are doing? I couldn't take Nax or even na, sent blood pressure up and heart rate up and gave me palps.

But post your blood results. You will get there I am sure but it takes us a long time to get this ill and can take a long time to get well imho but people on here can help

linda

Booblet profile image
Booblet in reply to fibrolinda

Hi Fibrolinda, (what a brilliant name!),

Thanks for your reply.  I agree with you, I think I am undermedicated.  I have completed a blood test (Blue Horizon). The test was for Cortisol and ACTH. they were both very low.

  RESULTS: Cortisol = 277  BASAL range (64-250)

                   ACTH     = 15                 range (10.00 - 46.7)

I have seen Dr Peatfield who examined me and suggested that I had Adrenal insufficiency, hence, NAX.

I also had the saliva test done:  But I did the "spitting procedure" wrong, I think.  The results were all over the place.

Regarding my T3 and T4.......I did have my Free T4 (FT4) tested by GP. Not got results to hand.

 Apologies for this....at this present  moment in time my head is all over the place.......cant seem to think straight or act accordingly - in the scheme of things.........which is so frustrating...

I hope your feeling OK?

Booblet

fibrolinda profile image
fibrolinda in reply to Booblet

in what way all over the place? Mine was a little low first thing, VERY high next time then both others slightly high. know what you mean about thinking/doing... I say my brain is a fog filled maze and when people speak to me its as if its, not in english so I have to translate it before I can reply :D 'Please wait, thinking', must get the t shirt.

you can get T3 and T4 done through blue horizon then see where your levels are maybe... just a thought

sorry for delay answering I am losing the afternoons still... the wall just moved from 1 pm to 3 pm then I am out of it.

Oh I was on citalapram ads for several years. Started NDT last September and stopped Citalapram a couple of weeks later... ooops... should have weaned slowly but I guess I was high on happy, especially at the time of year when I am normally fighting the big black pit of despair. Didn't happen at all this year :) I was lucky as no fallout at all from stopping abruptly. Very lucky. Theres the fog making me do stupid things again... sigh... not the first and won't be the last.

regards

Linda

Allyson1 profile image
Allyson1

Sounds like a very, very good endocrinologist could help..

Booblet profile image
Booblet in reply to Allyson1

Do they exist??  The one I have been to (NHS) was a complete ????

I think like a lot of members......money is a great worry......I know that there are some wonderful Endocrinologists around..........

ThanksBooblet

Allyson1 profile image
Allyson1 in reply to Booblet

Yeah, it took me several tries too:( it shouldn't be so hard for this basic stuff..

greygoose profile image
greygoose

The side-effects of Venlafaxine are horrendous, so that plus your low thyroid, I'm not surprised you feel terrible! Your stupid doctor should know that anti-depressants are not recommended for people on thyroid hormone replacement, and help you wean off them, rather than increasing the dose! Can you change your doctor? This one sounds more-than-average ignorant.

Have you had your vit d tested? If that is low - which it quite possibly is - that will cause arthitis pain. Actually, you're probably low in most nutrients by now. But, start with the basics. You're already taking B12, are you taking a B complex with it? All the Bs need to be kept balanced, because they all work together. But look for one with methylfolate, rather than folic acid.

Have you had your antibodies tested? TPOab and TgAB? If not, those need testing too, along with your FT4 and FT3. If you get all that tested, then we'll have a better idea of what is going on.

I agree that NAX doesn't suit everyone - could be making you feel worse rather than better. But with so much going on, it's difficult to tell what's causing what. So, how about stopping the NAX for a while and see how you feel without it? Just a suggestion. The vit C you've been taking should have had a positive effect on your adrenals. They also need all the B vits, and plenty of salt.

One thing is certain though, you need an increase in dose. Your TSH is too high for someone on thyroid hormone replacement. And, there is always the possibility that Thyroid s doesn't suit you. Have you tried any other form of NDT?

So, many things to think about, I'm afraid! :)  

Booblet profile image
Booblet

Hi,

thank for your reply:  I am taking Vit D supplement due to levels too low;  I really think I need to take T3....but need have tested with T4 first.  Whilst taking Thyroid s my TSH has been going down.........if rather slowly!! 

I am going to increase the dose of NDT poss for 6 months and then of the results are still negative change to another NDT.

But the main problem is that i am addicted to Venlafaxine (anti-depressants).  I will have to  try and think about that one.

Thanks again.

Is venlafaxine also called effexor? If so I was put on this year's ago and I was like a zombie on it. They kept having to increase the dose until I was up to the maximum which was around 250mgs. It made me worse. Suffered terribly with depression and anxiety and have been on every anti depressant going. Looking back I think it was hashimotos symptoms. If your doctor's insist you be on anti depressants sertraline is the best one to be on. It annoys me though how doctor's never look at the all the body's problems and the fact they are related to thyroid problems or vitamin deficiencies caused by thyroid problems. They'd rather just let things chug along With the minimum meds and help and deal with other symptoms as they arrise and treat them separate to the whole wellness of the body and getting fully better. They seem to miss the mark too often and too much.

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