I got started on 50mcg of Levothyroxine 4 weeks ago and diagnosed with Hasimotos. GP said retest in 4 weeks and would double me to 100mcg.
Serum TSH level 4.44 mu/L [0.35 - 4.94]
TSH reference range updated as of 14/10/21
ResultNormal
What you need to doNo Further Action
Surely 50mcg is not a full dose and that result isn't optimal. I'm so tired of battling. Feels such a battle to even get diagnosed. I barely feel any better now than I did 4 weeks ago.
You’re perfectly right. It’s absolutely not okay to leave you on a starter dose when your TSH is still so high. You should insist on making an appointment with your GP and telling him this and reminding him of his earlier treatment plan of moving forward with an increase in dosage.
While you’re there, be aware that testing TSH alone and judging hormone prescription levels by TSH alone becomes inadequate when you are being treated. You need to have both FT4 and FT3 measured too.
Also, have you had thyroid antibodies tested?
How about vitamin D, vitamin B12, folate and ferritin? All of these need to be optimal for the body to make the best of thyroid medication.
I feel for you. It’s such a battle to get well. Small doses made me feel worse, not better. But don’t cave in to shoddy medical treatment. You owe it to yourself.
Originally my GP tested everything and antibodies were high.
Serum thyroid peroxidase antibody concentration 276.8 ku/L [0.0 - 34.0]
Above high reference limit
Serum TSH level 16.71 mu/L [0.35 - 3.5]
Above high reference limit
Serum free T4 level 7.9 pmol/L [7.5 - 21.1]
That was 4 weeks ago so I assumed T4 would be tested again but seems just TSH and the reference range has since changed and now comes up as "normal"
I had vitamins etc tested too. Iron was low and I'm on 3 x 210mg a day iron.
I will be requested a GP appt and hopefully she listens to me and puts my meds up like she said she would.
Sorry, I’ve just looked back at your earlier post and, of course, you’ve had some of these things done and indeed are working on a few things, which is great!
It’s too bad, as you say, that they didn’t test FT4 again. It would have been useful to see where that is now.
Nevertheless I hope your GP is receptive to your dose increase. Fingers crossed.
You might also want to be aware that a good percentage of us on this forum, myself included, do our own thyroid blood tests from time to time, even if doctors also do them.
thyroiduk.org/help-and-supp...
You’ve probably read elsewhere on here that the aim of thyroid therapy should be to have TSH under 2 (for many it actually needs to be under 1), FT4 in the top third of its range and FT3 over halfway.
In any case, good luck again with the GP. Let us know how you get on! 🌸
Dose levothyroxine should be increased up again…..initially by 25mcg to 75mcg …..
Many people find increasing by more than 25mcg is too much
How ever…..suggest you take the 100mcg prescription from GP (assuming it’s still on offer) as you will likely need to be on 100mcg in a few weeks…..but initially only increase to 75mcg for 6-8 weeks..
Which brand of levothyroxine are you currently taking
I think it's Mercury pharma. I'll definitely see what the GP suggests and take any dose increase she gives lol
Yes…..usually it’s a battle to get dose increased
If she’s offered 100mcg …don’t turn it down
But just increase slowly
Though modern guidelines now say start at full replacement dose …..some people find it too much too quickly ..especially with Hashimoto’s
Thanks so much. I'll bare that in mind.I honestly didn't realise it would be such a battle to even get to this point. It makes you feel so much worse when you already feel miserable. It's really depressing and disheartening when you feel not listened to when you genuinely feel so ill.
Meanwhile working on improving low vitamin levels
Are you now taking a daily vitamin B complex ….remember to stop vitamin B complex the week before blood test….just supplement a separate folate as well as separate B12
As vegetarian you will always need to supplement B12 and likely to need to work longterm improving low ferritin
Perhaps I can reassure you a little?I am not sure if the “normal”comment was attached to the lab result or put on by the clinician who read your results. Nowadays the lab result comes in to the practice electronically with a computer generated reference range and comment. The TSH would be regarded as “normal” by the computer.
Every result is then read by a clinician who can put their own comment on. As these clinicians get a very large number of results ( sometimes 100 different patients in a day) it is not possible for them to look up every patient’s record and it is unlikely to be the GP who talked to you. They see the “normal” on the result and may put “no further action”. It is sad that continuity is no longer provided as the GP who had a conversation with you would very likely have realised this is not normal for you.
Please don’t despair…… make an appointment to discuss the result with your GP as see what happens. Automation causes all sorts of issues and may not be the fault of your GP who sounds sensible.
There is no battle yet!
That's what I was hoping so thanks for that. It's just frustrating isn't it?!I'm going to give it a few days as my new GP has been good so far to be fair to her.
I'll book a telephone appt in couple days with her and will update. *Fingers crossed*
Hi Eternity84
Apologies for this very long post to you.
All I can advise is get genned up…. It will take a while, but it’s worth it. Use your acquired knowledge to shine a light on their ignorance. You don’t have to be nasty, just ask them questions they can’t answer and then answer it for them. But if they bully, then let them have it, so long as you understand your condition. They are working off post it notes in terms of detail of knowledge, many don’t even know the current NHS guidelines. Meekly submitting to their mismanagement of your condition will keep them on side, but won’t help you get well.
I was started off on 25 µg of levothyroxine and left on it for 6 months, a non-functioning zombie only able to drag myself out of bed by lunchtime, then exhausted for the rest of the day for having done so.
The GP was working off the wrong range anyway and just reading lab results, but she was not competent to interpret them (inadequate training). I’m currently on 150 µg of levothyroxine and it does seem to be working. BUT! I have had to fight for every dose increase. Putting together reports on my symptoms against my blood results private and NHS and explaining to them what this means. On only one occasion have I had to browbeat a GP who simply thought being a GP made her omniscient. The others rolled over and filled the scripts, no time to digest the volume of information given 😂👍
I had to read-up to fight for my treatment. Looking at other peoples situations on this forum as well as advice given to me on my own situation has helped me start to develop a wider understanding.
Thank God for this forum it has literally saved my life….
It’s a SAD situation all round really. GP’s I have come into contact with seem to lack critical scientific thinking. They are given an over inflated impression of their limited knowledge and indoctrinated in you only need to consider TSH and free T4. Some don’t even test for free T4!
Some of us are only just in range, or don’t fit into the NHS streamlined ranges at all. Statistically speaking many of us are outliers - outside of the range, but still relevant. There is simply a dearth of knowledge in regards to thyroid diseases within the medical profession.
Anyway, the latest NHS guidance suggests a dosing 1.6 µg per kilogram of levothyroxine for people with hypothyroidism to get to a full replacement dose. It’s good at least that you’re starting dose was not that of a child or a person over 60 with a heart condition which is essentially what they did to me, but using the 1.6 µg x your weight could give you an idea of the dose you should end up on. Remember though, it is only a guide. Symptoms are the most important diagnostic.
The trouble is the majority of GPs don’t understand what the range is there for - it’s a guide only! Sadly most think the range is a ‘cup’ and that the patient is a ‘ping-pong ball’ and if they get the ping-pong ball in the cup they win a prize. They simply do not understand that you can be on completely different doses at either end of the range and be hypo (at the lower end) and be optimal and well (at the upper end) OR, heaven forbid, because of other confounding factors you may sit outside the top of the range before you feel well OR (panic stations) the range might not apply at all! 😱😂
Vitamins need to be higher than just in the bottom of the range SlowDragon has loads of info on this. GPs in the main have no idea on this either - refer back to cup/ping-ping ball scenario.
Re blood tests Free T3 and Free T4 are the most important - And of course the MOST important and almost universally ignored diagnostic - symptoms- how a person feels!
Someone on this forum also has mentioned that TSH was originally used as just a diagnostic for hypothyroidism and sadly has been misused as the guide to dosing when it simply is not relevant. Wish I could remember who - perhaps they will see this string and add context.
Makes sense really because if your thyroid isn’t making the hormone and it’s being introduced via a pill or liquid, why would your pituitary stimulate your thyroid? Thyroid-stimulating hormone is produced by the pituitary, so if the pituitary senses there is thyroid in the blood surely that negates the need to produce any thyroid stimulating hormone (TSH)? I’m still trying to make sense of all of this and unsure of the exact mechanisms - there are others far more knowledgeable on this forum but this is my simplistic interpretation.
But as far as data interpretation goes, I’m a little more comfortable - I have a scientific background. Understanding that many GPs have a limited ability to interpret data does kind of frame the treatment we get and explain the lack thereof.
That makes Total sense. It's crazy that we have to fight so hard though.
I've read about the dosage calculation. It works out 128mcg a day. I'm only small, well I was a lot smaller before this!! Lol.
Have ordered ferrous gluconate and so far my stomach is better on it although I'm starting the dose low and gonna raise it to what the GP prescribed. So hopefully that sorts my iron levels.
After all the suggestions on my other post I have ordered a B complex too and I know to stop that a week before bloods.
GP is booked to call me first thing Weds morning. So hopefully it won't be the battle I'm imagining. Atleast get to 100mcg I hope then see what bloods say before preparing for a battle to get a higher dose lol. Thank you
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