GP tells me to choose which symptoms to live with

[Polly04]

Hi, this is the first time that I have posted about my condition, but have been reading other people’s posts and advice since 2016, finding them very informative. I have now reached a point where I need to seek advice from others due to unhelpful GP’s. I am female, age 60 and a retired registered nurse.

I was told that I had a borderline under active thyroid back in April 2015.

FT4 14.2 (9.0 - 21.0) TSH 2 (0.20 - 5.0)

I was not started on Levothyroxine 50mcg until I presented with leg muscle pain, tiredness, brain fog and headaches in July 2015. I felt a good improvement on this dose. I also commenced Vit D 800units daily.

The following is the history of my blood results.

Feb 2016 (non fast) FT4 12.8 (9.0 - 21.0) TSH 3.9 (0.20 - 5.0)

Sept 2016 (fasted) FT4 13.2 (9.0 - 21.0) TSH 2.82 (0.20 - 5.0)

Sept 2017 (fasted) FT4 13.5 (9.0 - 21.0) TSH 2.31 (0.20 - 5.0)

May 2018 (fasted) FT4 12.6 (9.0 - 21.0) TSH 4.05* (0.20 - 5.0)

* Muscle ache/tiredness. Levothyroxine increased from 50 to 75mcg. Felt better for one month but then experienced palpitations so I went back to taking 50mcg. GP agreed.

August 2018 (fasted) FT4 16.8 (9.0 - 21.0) TSH 1.68 (0.20 - 5.0)

October 2018 (non fast) FT4 15.2 (9.0 - 21.0) TSH 3.17 (0.20 - 5.0)

April 2019 (fasted) FT4 12.5 (9.0 - 21.0) TSH 5.23* (0.20 - 5.0)

* Muscle ache/tiredness/internal jitteriness. Levothyroxine increased from 50 to 75 mcg. Palpitations came on quite soon after two doses, so I stopped.

Today I spoke to my GP about the above reaction who told me that I would have to choose between living with muscle ache OR palpitations. To which I replied.... really?! are you serious?! Her action was to recheck levels in 6-8wks. After prompting she agreed to check Vit D, Folate, Ferritin and B12.

I would appreciate anyone’s overview on this as I don’t know which way to turn 🤔😩

[SlowDragon Ambassador]

Palpitations can be due to under medication as well as over medication

Your results show you are under medicated

Low vitamins are likely

You also need TPO and TG thyroid antibodies tested to see if cause of your hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's.

About 80-90% of primary hypothyroidism is due to autoimmune thyroid disease so it's likely

Low vitamin levels are extremely common. Low vitamin D often also has low magnesium

Which brand of Levothyroxine are you currently taking?

Is 75mcg dose the same brand - as 50mcg plus 25mcg

If it's a 75mcg tablet that will be Teva brand. Teva upsets many, many people due to having mannitol as a filler

[Polly04 in reply to SlowDragon]

Thank you for your reply and advice. I’ve checked the brands and my usual 50mcg is NorthStar and the new 25mcg is Teva. Could my palpitations be caused by the Teva filler, or is the upset people experience something else?

[SlowDragon Ambassador in reply to Polly04]

Highly likely. Teva upsets hundreds, if not thousands of people

healthunlocked.com/search/p...

Not many brands make 25mcg

Mercury Pharma or Eltroxin are both same brand, just different label - they make a 25mcg

thyroiduk.org.uk/tuk/treatm...

North Star, Almus and Activis are all same manufactures, just different boxes. They don't make a 25mcg

So to stay on North Star, which you know doesn't upset you you can either cut a 50mcg tablet in half to take an extra 25mcg per day. Or as Levothyroxine is a storage hormone, it's perfectly fine to take 50mcg one day and 100mcg the next day to average out at 75mcg per day. Best to get weekly pill dispenser if doing alternate day dosing. It's very easy to forget which day you are on

Put in a yellow card for Teva and ask GP to make a note on ALL future prescriptions - "No Teva"

yellowcard.mhra.gov.uk

Ring GP surgery and explain. Request new prescription for either different brand 25mcg or that you will stay only on North Star and need a new prescription to cover extra 50mcg tablets that you will need.

Request that vitamin levels are tested next week too

You are nowhere near being ready to consider T3

Vitamin levels need to be optimal first and TSH down around 2 by getting stable on increased dose of Levothyroxine

Once you are on 75mcg daily for 6-8 weeks then next step is getting full Thyroid testing privately of TSH, FT4 and FT3 plus BOTH TPO and TG thyroid antibodies

[Polly04 in reply to SlowDragon]

Thankyou sooooo much for this advice. I really appreciate your guidance. I checked out my two local pharmacies yesterday and my usual only supplies TEVA in 25mcg and the other, a BOOTS branch supplies MercuryPharm but default to TEVA, so not reliable. I will get back to GP and hopefully they will support.

[shaws]

Welcome to our forum and am sorry you are not being treated optmally. That's why the majority on this forum 'DIO (do it ourselves) as we then know what suits or doesn't.

[humanbean]

In addition to SlowDragon 's response on the thyroid possibilities, low nutrients can cause palpitations too :

Palpitations be caused by low iron :

healthline.com/nutrition/ir...

Also low B12 :

b12deficiency.info/signs-an...

Also low folate :

bupa.com.au/health-and-well...

.

High sugar intake and/or hypoglycemia can cause palpitations and fast heart rate, so can drinking caffeine.

cardiacmatters.co.uk/why-do...

.

If you can, get your basic nutrients tested, either by your doctor or privately. You also need to know what your Free T3 level is, and it needs to be tested at the same time as Free T4 to find out how well you are able to convert from T4 to T3.

For more info on private testing that doesn't involve doctors : thyroiduk.org.uk/tuk/testin...

If you want to know more info about choice of test(s) and how best to do the test and get the most reliable results just search the forum or ask.

[Polly04 in reply to humanbean]

Thanks for your response. I will look into these other areas as well.

[MissGrace]

That’s just not good enough - your GP is offering you the devil or the deep blue sea. Since Levo doesn’t appear to be able to stabilise your condition or make you feel well, maybe your GP should be referring you to an endo with a recommendation you have a trial of T3. After all, you’ve tried Levo and still have symptoms. Or maybe your GP could test your T3 so you have a clearer idea of what is happening. You can take as much T4 as you like, but if you don’t convert it into enough T3 you’ll remain feeling a few sandwiches short of a picnic! 🤸🏿‍♀️🥛

[Polly04 in reply to MissGrace]

Thanks for responding. This is a good point and once I get some private tests done, I will look for an Endo as a past GP wouldn’t even discuss T3 as they don’t screen for it.

[waveylines]

Most likely you are under medicated not over medicated.....so needed an increase. So in your shoes I would go back up to the 75mcg but also check your b12, folate, ferritin & vit D. I read on thyroid uk website that you need a good level of b12 to help the conversion of thyroid hormones from T4-T3. Levothyroxine is T4.

B12 & iron are often low in hypothyroidism so may need supplementing.

The only way to check how well you are converting is to have a private thyroid panel test as Ft3 very rarely done on nhs even if GP requests it....lol.

[Aurealis]

I think you’re undertreated with results like those. If you’ve been like that for a while a dose increase is a bit of a surprise to your heart. I would guess that you convert well if you get palpitations strong enough to make you stop after two doses. It is worth making sure you don’t have Teva, so many people have problems with it (I can’t take their T3, but not tried their Levo). You could try increasing more gradually eg take extra amount at opposite end of day for first few days, or start with increase every other day.

The symptom I’d choose to live with is a GP who is unhappy with my test results

[Polly04]

Thanks for your response. I have since looked at the two brands and my usual one of 50mcg was NorthStar and the new 25mcg is Teva!! Unfortunate for me since I’ve read the comment surrounding TEVA! I’m going to try a phase increase to see how it goes.

[Hidden]

you may find the following links useful.

Thyroid Federation International

Annual General Meeting 2017 Belgrade, September 8, 2017

Brands are not interchangeable!

thyroid-fed.org/tfi-wp/thyr...

AACE, TES, and ATA

Joint Position Statement on the Use and Interchangeability of Thyroxine Products

Click on the following for pdf

AACE, TES, and ATA Joint Position Statement on the Use and Interchangeability of Thyroxine Products

aarda.org/

aarda.org/autoimmune-connec...

The Research Roundups are very helpful

[Polly04 in reply to Hidden]

Thanks for this info. I’ll make time to read through it all.

[galathea]

Not taking statins are you?

[Polly04 in reply to galathea]

No, I don’t take statins.

[Musicmonkey]

Has your GP thought about Secondary Hypothyroidism? If you Google Secondary Hypothyroidism, you will find references that show low/normal TSH, as in your case, despite low T4. Normally in Primary Hypothyroidism, you would expect the TSH to be high and out of range.

There could be lots going on. You may not able to tolerate Levo, or the particular brands you've been given. You may be a poor converter of Levo. The T4 you have may be converting to rT3, etc, etc.

Take the info re potential Secondary Hypothyroidism to your GP and ask for referral to a knowledgeable and sympathetic Endo.

[Polly04 in reply to Musicmonkey]

Thanks for your reply and advice. I’m learning so much.

[silverfox7]

Thinking a few small glitches need tweaking and hopefully things will then be more stable. Things I feel have helped me the most start with consistency, keep to the same brand and use a pill cutter to get you the right dose or alternate days if that works with your dose. Try to take at the same time each day with a full glass of water in an empty stomach and nothing else but water for an hour. Other meds should be two hours later and things containing Vit D, calcium, Magnesium and iron 4 hoursafter thyroid meds. Get results for Vit D, B12, folate and ferritin as we can often be low and supplement where necessary. They also helpyour Thyroid to work better but they need to be. Optimal, not just in range so post reading for advice. May be stay on the lower dose a bit longer in case your body needs time to get used to it but as been said sometimes the issue is not enough medication

[Polly04 in reply to silverfox7]

Thanks for your response. I’m taking in all of the advice that I’ve received and at least GP has agreed for Vits to be checked.

[Polly04]

Thanks for your advice. I’m getting a better picture now of what I should be doing.