Need help with side effects and latest TSH - Thyroid UK

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Need help with side effects and latest TSH

GeekyMummy profile image
9 Replies

Hi All,

Hope you are all well.... as can be :)

I really need some advice regarding my current situation with my Thyroid and latest results.

I am confirmed Hashi's - Anti bodies high. TSH was originally 32 when I found out. I was put on 50mg Levo, retested and still at 3.8 TSH - After running through my knowledge picked up from this forum.. Dr agreed needed to be in the range of 0.05 to 1.0 with Hashi's to feel better, upped me to 75mg Levo.

Here comes the problem....... Since being on Levo I have developed a bad tremor in my neck, and internal tremors whilst sleeping which my partner doesn't notice but they shake me awake.... it's not when I am falling to sleep, it can happen about 3-4 times throughout the night. It got worse when I added the extra 25mg Levo.... the catch is that all my other Thyroid symptoms started to feel better on the 75mg but I can't deal with the constant neck tremor and internal night time shakes.

I have just done a private test, it only tested TSH and FT4

TSH 2.66mIU/L (0.27 - 4.2)

FT4 16.9pmol/l (12.0-22.0)

Also I am on Ferrous Fumerate x 2 daily for low Ferritin and 20,000 Vit D per day for Vit D Deficiency. I also take B 12 complex with Folate.

My question is does this happen to anybody else and is it Levo related? mine only started once I started Levo.

Thanks,

Stacey

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Clutter profile image
Clutter

GeekyMummy,

You are undermedicated to have TSH 2.66 on 75mcg Levothyroxine. Perhaps the neck tremor will improve after you are optimally dosed.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

GeekyMummy profile image
GeekyMummy in reply toClutter

The neck tremor seemed to get worse with the increase to 75mg. It’s more constant now. And the internal tremors is as though my entire upper body is vibrating... very odd.

I’ll send an email to Dionne for the article, it’ll be helpful. Thank you Clutter.

Clutter profile image
Clutter in reply toGeekyMummy

GeekyMummy,

It may be coincidental that tremors got worse when you increased dose. It's worth trying an increase in case undermedication is causing it. When you get private tests please check FT3 too. It is low FT3 which causes hypo symptoms.

GeekyMummy profile image
GeekyMummy in reply toClutter

Hmm possibly but I doubt it... I know my body and I never had any shakes prior to being put on Levo... they gradually started appearing on 50 but when upped to 75 they’ve become an all day occurrence. At first I wondered if I’d gone hyper hence the private test but it’s shown I’m not hyper so it can’t be that.

Yes I’ll definitely be testing my FT3 each time, it was the offer that was on didn’t include FT3. My previous test included FT3 which was from 5th Oct.

TSH - 4.98 (0.27-4.20)

FT4 - 13.7 (12-22)

FT3 - 4.62 (3.10-6.8) (which I thought isn’t too bad am I right?)

Clutter profile image
Clutter in reply toGeekyMummy

Geekymummy,

You were undermedicated to have TSH 4.98 and FT4 is low in range. The high TSH will have been flogging thyroid and conversion so it's not possible to say that FT3 4.62 is good. It's not sustainable anyway as it will fall as FT4 drops.

I had internal tremors (and a host of other adverse symptoms) shortly after starting Levothyroxine. They improved each time I was taken off Levothyroxine and resumed and intensified the longer I was on Levothyroxine. I finally found that adding T3 to Levothyroxine calmed the adverse effects and also raised my FT3 which had been below range.

It's very difficult to get Liothyronine (T3) prescribed on NHS without an NHS endocrinologist's recommendation but it may be worth asking your GP to prescribe 10mcg which is equivalent to 30mcg Levothyroxine. If, as is likely, GP refuses you might want to buy T3 online and trial 12.5mcg for a few weeks to see whether vibration and other symptoms improve. If so, write a post asking members to recommend sources via private messages.

GeekyMummy profile image
GeekyMummy

What can cause adrenal stress? I take between 1000-2000 Vitamin C per day but in the drink form when taking my iron supplements. I take 400mg of Magnesium per day. I’ll try getting the organic Vit C and higher dose of Magnesium. Thank you reallyfedup123.

GeekyMummy profile image
GeekyMummy

Very interesting information. I’ll try and source some with a high potency.

Just out of curiosity.... with your family experience.. these shakes/tremors I’m experiencing.. are they likely to get better or get worse if my dose is upped again as I have a review before Christmas?

I forgot to mention... I went to see the GP not long after the shakes got worse (when my Levo was upped to 75mg)... she just said it wouldn’t be associated with Thyroid and it’s probably anxiety, so I expressed how unhappy I was and she said ‘what do you want me to do about the symptoms? There not really a big issue’... my best friend was with me at the time because I was in a wheelchair after a foot operation and she was appalled.

GeekyMummy profile image
GeekyMummy

My GP today said she knew of nothing called NDT and that the only tablet she is aware of is Levothyroxine. They said ask the Pharmacy for a different brand to see if it stops my shaking. Typical x

SlowDragon profile image
SlowDragonAdministrator

Are you on strictly gluten free diet ?

This can reduce stress on adrenals

Also do you supplement selenium

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Also would recommend getting DIO2 gene test

But perhaps see if T3 really helps first.

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