FUMING, : After showing GP blood results from... - Thyroid UK

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FUMING,

Polo22 profile image
18 Replies

After showing GP blood results from Blue Horizon , which clearly show undermedicated we discussed increase to 150mcg. She said she agreed but wanted NHS bloods done, she agreed if that still showed undermedicated she would then happily increase. Bloods done Monday morning, results back think Tuesday, TSH 5.3mu/L freeT4 19.8pmol/L. Couldn't get appointment, not even to talk on phone. Left message with surgery to ask she increases asap , took last of Thyroxine this am, didn't want to reorder on app as it would be wasteful when waiting for increase, explained this to them. Contacted them this am, they assured me message had been passed on and they would chase it. got call from this pm to tell me GP had done px and it was waiting for me in pharmacy.

Got there through rush hour traffic to be told no, it's still 125mcg. Told them to keep it and came home.

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Polo22 profile image
Polo22
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18 Replies
linda96 profile image
linda96

What was the FT3 result?

With a FT4 near the top of the range and TSH above range, did the Dr not query this? T4 feeds back to TSH, so why isn't TSH responding by shutting down a little?

I think there's something wrong with TSH, but need the FT3 result to triangulate.

Polo22 profile image
Polo22 in reply tolinda96

FT3 was requested but no sign of result being back yet and IFA and Vit D not back either

SlowDragon profile image
SlowDragonAdministrator

Bloods done Monday morning, results back think Tuesday,

TSH 5.3mu/L

freeT4 19.8pmol/L.

Please add ranges on these

Was test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are 100mcg and 25mcg tablets

Suggest you pick up prescription and then get extra 25mcg tablets prescribed

Polo22 profile image
Polo22 in reply toSlowDragon

TSH 5.3 mU/L 0.27 - 4.20 Free T4 19.8 pmol/L 12.0 - 22.0 test done shortly after 9 am, last dose was about 8 am Sunday . had not ate before tests just water, Accord 100mcg, previously Actavis,,, Actavis always worked best for me. 25 mcg often different brands I know you told me Actavis doesn't come in 25 mcg. The woman in chemist was lovely, came over with a handful of different brands they had the Accord 100mcg and various brands in 25 mcg I told her I couldn't remember which was the one I had had last but that Actavis/Accord doesn't do 25mcg. I know you responded to a previous post of mine with all the info re brands but can't find it. Still waiting on T3 IFA and vit D results PTH 5.5 pmol/L 1.6 - 6.9 waiting on Vit D,

calcium adj cal 2.33 mmol/L 2.20 - 2.60, inorganic phosphate 1.23 mmol/L 0.80 - 1.50

total calcium 2.29 mmol/L Albumin 45 g/L 35 - 50 total protien 70 g/L 60 - 80

got print outs on it says the thyroid results it says Advise repeat in 12 months or 6 months if symptomatic , they are joking

SlowDragon profile image
SlowDragonAdministrator in reply toPolo22

got print outs on it says the thyroid results it says Advise repeat in 12 months or 6 months if symptomatic ,

That’s most likely a generic printed comment…anyone on levothyroxine, if they still have symptoms and TSH over 2 then need dose increase in

Assuming you do get increase in dose to 150mcg

Accord (use to be Activis) make 50mcg tablets

Accord also boxed as Almus via Boots or Northstar via Lloyds

Beware Northstar 25mcg is Teva brand

Polo22 profile image
Polo22 in reply toSlowDragon

Thank You, I couldn't remember other names

McPammy profile image
McPammy

Looks like you could be a poor converter to T3. Your T4 is high in the range, not over, and your TSH is high and over range. This generally indicates you’re a poor converter. Did horizon tests do your T3 also. Was your T3 low? If so this is why you’ll be struggling.

Polo22 profile image
Polo22 in reply toMcPammy

Blue Horizon results from 10th May TSH 8.91 0.27 - 4.20 mU/L. T4 total 106.0 86 - 181 nmol/L. Free T4 17.2 12 - 22 pmol/L Free T3 3.11 3.1 - 6.8 pmol/L . Have a telephone consultation with practice at 10 am, don't know which Dr, was offered face to face but couldn't trust myself to not lose it completely. Last couple of weeks on top of everything else have been getting really agitated and angry but more than angry. Sheer unadulterated rage

golfmargaret profile image
golfmargaret in reply toPolo22

Your T3 bottom of range… amazing that GP didn’t accept Blue Horizon tests. Hope you got some help from your phone consultation.

Polo22 profile image
Polo22 in reply togolfmargaret

Thanks , they haven't rang yet. They are probably drawing straws. It's my own fault I assumed they knew what they were doing. AAArrgghh just had the call, explained everything, she is refusing to increase. I again pointed out the results from both Blue Horizon and NHS indicate a problem, under medicated and maybe needing combination treatment. Her response was we have been advised by thyroid expert/specialist and proceeded to read out the as SlowDragon says generic comment , I said it was a standard response and reinforced I was still experiencing symptoms and insisted numbers proved action was needed. She is consulting with colleagues and will ring back. Is it too early for Gin

SlowDragon profile image
SlowDragonAdministrator in reply toPolo22

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that if patient still has symptoms dose can be increased

TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Persevere - have all guidelines printed and be ready to quote them

healthunlocked.com/thyroidu...

Approx how much do you weigh in kilo

Guidelines on dose levothyroxine by weight is approx 1.6mcg levothyroxine per kilo per day

Can be useful for arguing for dose increase

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/files/docs/...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

healthunlocked.com/thyroidu...

jamanetwork.com/journals/ja...

Polo22 profile image
Polo22 in reply toSlowDragon

Thank You for all these links/info will read later. GP rang they have decided I can have the increase, 🤦‍♀️ I didn't rub her nose in it, need to pick which fights are worth energy and no point in burning bridges yet, but not going to let them walk all over me. You have all been a godsend

SlowDragon profile image
SlowDragonAdministrator in reply toPolo22

Well done

Make sure you get same brand levothyroxine

Polo22 profile image
Polo22 in reply toSlowDragon

Hi went to Lloyds they gave me Northstar for both 100mcg and 50 mcg.

jade_s profile image
jade_s in reply toPolo22

Well done you!!! Very happy for you.

McPammy profile image
McPammy in reply toPolo22

If you get nowhere with normally uneducated GP on thyroid. I’d ask for an urgent referral to see a endocrinologist.

McPammy profile image
McPammy in reply toPolo22

I do think you could benefit from adding Liothyronine T3. But you’ll probably need to go private only for that to happen any time soon. NHS will take forever. I went private only to secure my T3 and road to much better health and well-being.

Batty1 profile image
Batty1

You should have taken the script and argued with the doctor later on she could have given you another prescription. I will never understand why doctors won’t accept lab results from accredited labs for thyroid just seems stupid to me.

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