Hypothyroid Symptoms

[Rosie-B]

I am 44 and was diagnosed with an under active thyroid (autoimmune) 6 weeks ago after going to see the doctor really concerned about a muscle twitching problem I developed 2 years ago, shortly after having a baby. I herniated a disc in my back 4 years ago and it’s in my leg that I developed severe sciatica in. I was also really tired but I always am as I have been anaemic for over 20 years. Test results:

TSH - 15.61 (0.27-4.2)

FT4 - 10 (11-22)

Ferritin - 21 (30-150)

Folate - 6.7 (2.4-17.5)

B12 - 359 (197-771)

Before I got the results I noticed my tongue was a bit swollen and just felt weird. I was put on 50mcg of Mercury Pharma levothyroxine and I am due to get a follow up blood test in 2 weeks. Within a few days of taking the tablets the muscle twitching issue improved. It’s still there, but the tablets seem to have made a real difference in frequency and intensity.

But, my mouth still feels really weird, worse than before. I have a scalloped tongue and it just doesn’t feel right. I also get dry mouth quite a lot. Is a swollen tongue a common symptom of hypothyroidism and is the muscle twitching likely to be related to the condition?

[Sleepman]

I am getting near to 2 yrs into this My tongue was a mess at start.

I had red patches on it too.

Vit D was low. Have you had tjis tested.

On levo it got better quickly.

Lots of things do weird things when your battery/levo/T4 levels are low. Everyone is different.

I had weird things on my hands, fingers locking I think. Aches and pains. Pins and needles.

Good you are on path to recovery.

Read slowdragon and jaydee posts. The admins in this group are incredible.

1. Get you thyroid antibidies tested. It is important to know if autoimmune type.AI

2. If AI low thyroid then many, like my Mum and me need to be gluten free. It makes me tired and yuk for a week. I did not show up on Celiac blood test. Worth getting this done.

3. You seem to be tolerating T4 well. This is good.I pushed hard for increase as it is a slow recovery and such a slow process. If AI, your thyroid could be releasing T3 while it's glands are dying off. This is a reason to go slow.

My TSH was 79 and they could not measure T4.

4. If you are in the small minority with problems getting rid of symptoms then getting some blood tests with T3 levels is important. I do/did private home tests for about £30 as unlikely to be done on NHS.

Be kind and gentle with yourself, you are in recovery. Do not over do it ... if you can help it!

Let people around you know, they need to cut you slack.

[Rosie-B in reply to Sleepman]

Thank you, I never realised hypothyroidism was such a big deal until recently!

[Sleepman]

@Rosie-B Your tongue picture really reminded me of my problems.

It was gluten for me though.

I went gluten free a year before finding out I was AI low thyroid.

I was emailing myself with what I had eaten and symptoms and it took a couple of months to calm down by the looks of it.

[pennyannie]

Hello Rosie-B and welcome to the forum :

A scalloped tongue is a very common physical symptom of hypothyroidism.

If you go into Thyroid Uk - thyroidukorg - this is the charity who support this patient to patient forum where you will find much more information on all things thyroid including a list of symptoms experienced when either hyper or hypo - thyroid - and as you will see - some symptoms can sit in both camps - just to confuse the issue !!

No thyroid hormone replacement works well until the core strength vitamins and minerals of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels and not just somewhere in a NHS range - as some ranges are too wide to even be sensible.

As a guide - I now aim to maintain my ferritin at around 100 - folate at around 20 - active B12 125 ( serum B12 500++) and vitamin D at around 125.

So looking at the 3 results you have there - all need supplementing - with ferritin needing investigating first - do you have a vitamin D reading please ?

You say you have been anaemic for 20 years - what medication has been prescribed ?

So - once on thyroid hormone replacement we need the TSH maintained below 2 -

which will happen as your dose of T4 is slowly increased and we generally start feeling better once the T4 is up in the top quadrant of it's range at around 80% -

which should then convert to a good level of T3 at around a 1/4 ratio T3/T4.

T4 - Levothyroxine is a pro-hormone which needs to be converted and absorbed in the liver / gut into T3 which is the active hormone that runs the body -

much like the fuel that runs a car and the thyroid like the gear box -

and in order to go and come back on a daily basis and do all that we need to do -

we need a good level of fuel in the tank - and currently with a T4 under the range - you are 'running on empty' and the chances are your T3 is much too low for you to function as you need to - with some areas of your health and well being short changed. and you getting symptoms, as there aren't enough thyroid hormones circulating in your blood stream to support your needs.

Were thyroid antibodies also run so to know if your hypothyroidism Auto Immune - they would look like TPO / Tgab readings and ranges ?

[Rosie-B in reply to pennyannie]

Thank you for your response. I’ve been all through my results a number of times and there isn’t a vitamin D readout and not a thyroid antibody test result (although I know there must be a result as I had to go back for a blood test specifically for an antibody test).

Anaemia - at the moment I’m on ferrous fumarate 210mg one tablet a day. When I was pregnant that went up to 4 a day, plus I had to have several iron transfusions and threatened blood transfusions.

My mum has been hypothyroid for a long time, her sister hyperthyroid, I never realised how important it was until now.

[pennyannie in reply to Rosie-B]

Don't worry - you can get both the vitamin D and the antibody blood test run again :

You've a lot of information here to read and understand - knowing if your hypothyroidism is AI is important - frequently this means there are gut and stomach issues and certain food intolerance to gluten, dairy, wheat etc and since the thyroid hormone is converted and utilised in the gut and liver - we do need as optimal a level of health elsewhere in our body.

Being iron deficient for 20 odd years - may cause issues - as we do need a strong solid ferritin base for optimal conversion and absorption of the thyroid hormone -

if there are acknowledged gut issues here is a liquid form of T4 should you not be able to tolerate the conventional Levothyroxine tablets.

You might like to dip into the research and suggestions of Dr Izabella Wentz who has and writes about Hashimoto's - the most likely thyroid AI disease - and see if this correlates at all with your symptoms thyroidpharmacist.com

[Redforme]

Hi, I’m new to all this too but just wanted to add since I’ve been taken Levothyroxine my mouth is like a bird cage, dry and driving me nuts. I’m sucking lemon sugar free sweets, drinking lots of water, mouthwash for dry mouth but nothing seems to be working. I also have a dry sore throat that just won’t go. I’m hoping it improves too, good luck

[Rosie-B in reply to Redforme]

I’ve heard that the dry mouth improves once dose is increased - no idea how or if that is true, but my fingers are crossed. Good luck to you.

[Sleepman]

My Mum never made a big deal of thyroid issues either.If you convert to T3 well then likely ok like most are.