Thyroid UK
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Question Time.....Again (Sorry) T4, Myxedema and the rest!

Hello wonderful people of HU,

I am sorry to yet again be posting another search for info, I hope one day to be a contributor but alas, I am still feeling very unwell. I've tried to speak to my doctor about all this and the line is usually - eat less/exercise more as its all down to my recent weight gain!!!!

This is my 4th Week of NDT I am raised to 2 grains (2 @4am and 2 @1pm), I am on a list of supplements and have started using ACV as well.

So here we go again:

1) Myxedema: How can you tell if you have it? I am swollen all over and do find it hard to pinch certain areas of the body, though some swollen areas I can still pinch. I am looking at taking NAC for this, but is it bad to take if I have mis-self diagnosed this?

2) Is it possible to have too much T4 from ndt? From my last blood tests its clear that I do have low T4 but also that I am not converting it to T3, are there any adverse effects of a build up of T4 that isnt being converted to T3? I ask this as I have been presented with a host of new symptoms since starting NDT. Namely, fibromyalgia like 'symptoms'. I think this is surely all part of being hypo though and I don't actually have Fybro?

3) I do seem to be feeling worse than before, could this be that I am still under medicated or that I am having an adverse reaction to NDT (too much t4 as above)?

4) Waking up in the mornings is super painful- My whole body aches/ hurts, I have bad acid reflux and walking on my feet/ankles is so so painful. I'm 34 years old and my grandmother can run circles around me!

5) Swollen neck/ Thyroid?: My neck has been getting progressively more swollen, and with that dry/lump in throat feeling. I was told I had a goitre but it doesn't look like a ball as such - more like a 'thick neck, like some one on steroids' This has seemed to been getting worse since starting NDT. Is this cause for concern, should I try and get a scan? (My GP is already dubious, I don't want to have to go and fight unless its really necessary")

List of most common symptoms;

Some are worse/more frequent than others but here is the list:

- Constant inflammation/swelling/ retaining of water

- Daily acid reflux ( I take Betaine HCI with meals but this doesn't seem to be helping'

- Irritable bladder


- constipation / Diarrhoea

- No energy ( I think I have about 4 hours in the day where I am working on reserves and then I just crash)

- Weight Gain - monthly! I seem to bloat each month around the period and then never de-bloat. Total weight gain about 4 stn since October.

- Hair thinning

- Brittle hair and nails

- dry itchy flaky scalp ( this seems to have been better since using PK shampoo)

- Abdominal pain - always on the right side (kidney pain?)

- Pain getting out of bed in my feet, every morning.

- Violent mood swings

- Foggy brain

- Small Goitre

- Pain down inner right leg and groin

- Nausea

- Lumps around jawline

- Constant need to pop ears

- Hay fever symptoms (never had it before)

- Very dry skin

- Dry itchy lump in throat feeling (this has come since starting ndt)

-Stabbing pains - sometimes in the legs sometimes the stomach very random.

- hard to breath

List of Supplements:

Betaine HCI


Selenium 200 mcg

B-12 5000 mg

B-Right (Jarrow) Methylcobalamin B12 + Pantethine + P-5-p

Vitamin D3 5,000 iu

Cod Liver Oil 1000 mg

Krill Oil

Primrose Oil

Zinc 25 mg



Magnesium 500 mg

Progesterone Cream

L-Tryptophan Peptide

vitex agnus-castus

Methyl folate (starting today)

Vit K2 (starting today)


NAC (on order)

Iron (on order)

Blood results

' "Plasma vitamin B12 level" 510 ng/L (200 - 900)

' "Serum folate" 7.4 ug/L (2 - 17)

"Full blood count - FBC"

' "Total white cell count" 8.0 10*9/L (4.0 - 25.0)

' "Red blood cell (RBC) count" 4.29 10*12/L (3.5 - 5.5)

'"Haemoglobin estimation" 125 g/L (100 - 165)

"Haematocrit" 0.38 ratio (0.32 - 0.47)

' "Mean corpuscular volume (MCV)" 88.5 fL (75 - 105)

' "Red blood cell distribut width" 12.1 (11 - 15)

' "Mean corpusc. haemoglobin(MCH)" 29.2 pg (26 - 35)

-"MCHC" 330 g/L (290 - 350)

Will be filed as: 429..00 Mean corpusc. Hb. conc. (MCHC)

' "Platelet count" 299 10*9/L (150 - 450)

-"HYPOCHROMIA %" 0.5 %

Will be filed as: 42EZ.00 RBC colour/staining NOS

"Blood film microscopy"

"Neutrophil count" 5.2 10*9/L (2 - 7.5)

'"Lymphocyte count" 2.1 10*9/L (1 - 4)

"Monocyte count" 0.4 10*9/L (0.2 - 0.8)

' "Eosinophil count" 0.1 10*9/L (0.0 - 0.4)

•"Basophil count" 0.0 10*9/L (0 - 0.1)

-"Serum ferritin" 60 ug/L (15 - 250)

Ferritin ref. range - Mean value higher in post

menopausal women.

"Serum total 25-OH vit D level"

"Serum total 25-OH vit D level" 66 nmol/L (75 - 200) "Low"

Vitamin D status may be adequate or borderline

insufficient. Advise supplement only if clinically

indicated. If follow up of vitamin D level

required, allow 3 months before re-testing.

' "Serum calcium" 2.33 mmol/L (2.10 - 2.60)

' "Calcium adjusted level" 2.25 mmol/L (2.10 - 2.60)

' "Serum inorganic phosphate" 0.99 mmol/L (0.80 - 1.50)

▪"Serum albumin" 44 g/L

In pregnancy Albumin reference range:

12 weeks: 31 - 51 g/L

24 weeks: 26 - 45 g/L

36 weeks: 23 - 42 g/L

Thyroid Bloods

DHEAS (Blood Spot) 153 μg/dL 40-290

SHBG (Blood Spot) 30 nmol/L 15-120

Free T4 (Blood Spot)* 1.2 ng/dL 0.7-2.5

Free T3 (Blood Spot) 2.8 pg/mL 2.5-6.5

TSH (Blood Spot) 1.2 μU/mL 0.5-3.0

TPOab (Blood Spot)* 92 IU/mL 0-150 (70-150 borderline)

13 Replies

Hi Rhsana.

I'm sure others will be along shortly with more advice but here's my 10p worth:

The best place to do the "pinch test" is the upper arm. I found that there was no way that I could pinch anything other than inches of what felt like fat. II started NDT back at the beginning of September and it's only now that the skin is starting to feel less solid - I'm currently on 3 grains daily. My weight has gradually increased over the last 2 years and is only now starting to stabilise. Particularly galling as I'd lost 3.5 stone before all this kicked off and have now gained 2 of those back again.

As for the aches and pains - I found that mine initially got worse with supplementation (to the point that my knees were almost too painful to stand on) but after a couple of weeks it all settled down and I haven't had any trouble in about 6 months now. I've read a few posts which suggest that the discomfort initially may be down to the body healing itself and it certainly seemed that way to me, but that's not exactly scientific!

What made you start taking the betaine? Did you do the bicarb test for low stomach acid?


Hi Hunny59,

Thanks for your reply! I am sorry to hear you were suffering similar Issues but, happy to hear you are feeling better! Its also comforting to know that it is passing. I'm really low with it all at the moment and its hard to see the light at the end of the tunnel. So thank you so much for this! Taking the Betaine for low stomach acid yes. I didn't do a test, but I suffer from Gerd (acid reflux?) I really thought 2 grains would be enough but I will look to raise again in two weeks! Thank you again and sorry about the italics, this site has some weird command buttons!

R xx

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I was diagnosed with a hiatus hernia 30 years ago and put onto PPIs. My trainer suggested my problem may be low stomach acid and told me about Betaine HCL with pepsin. I came off the tablets and did the bicarb test ( and didn't belch for five minutes so started on betaine. I found it really hard to adjust it and find the right dose for me so now use Apple Cider Vinegar - much cheaper for me and much easier to adjust dosage!

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I have never heard of that, I'll have to get googly! Yes I use ACV as well, might just stick to that then if its working better for you! x

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What works for one may not work for another but it's simple and cheap enough to test :)

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What dose Levothyroxine were you taking prior to NDT? Are your symptoms worse on NDT than Levothyroxine?

You can't have low FT4 and be getting too much T4 from NDT at the same time. If FT4 is low there is insufficient T4 to convert to T3, not necessarily a conversion issue.


Hi Clutter,

I was on 25 then 50 mcg of Levo, I would say over all I felt worse on levo. Though some symptoms I have had before being medicated and they have seemed to get progressively worse through levo and now NDT. The aches and pains have been constant, and I am not sure if that is because of being hypo or because I am no longer doing any exercise because of low t3? Thanks for clarifying the T4 thing, I am still trying to get my head around how it all works!

R xx



I think you may be overmedicated on 2 grains which is equivalent to 150mcg Levothyroxine. It would be a good idea to check levels in case your dose needs adjusting.


Hi Clutter,

Overmedicated? Thats interesting, Is it possible I am overmedicated for T4 and under medicated for T3?

R x



It's possible, but there's no point in guessing, you should have a thyroid test.


Ok, I was told to wait 6 weeks after starting NDT, or do you think its ok to just do it now? Thanks Clutter!



I'd wait until you have been taking 2 grains for 6 weeks.

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Ok, thanks Clutter x


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