Hi I'm currently on 100mcg of Levothyroxine. I have been on 100 for around three years with no issues. Now yesterday I began to feel a bit unbalanced whilst walking and standing. This has happened before the last time was in 2018 and I believe my medication was raised from 75 to 100. I rang my Dr today asking for either a blood test or medication review. Cannot have either at the moment due to covid and telephone calls only. I was planning to see if I felt better by taking 2 100mcg thyroxine pills. to try and help. I know dosages go up in 25s but like i say my Dr isn't much cop at the moment. What would you do. Plus have you guys had the following symptoms. feeling like you are walking on a boat not vertigo but an unbalanced feeling. Im ok but just frustrated.
Thanks in advance for responses
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Jelley93
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I certainly wouldn't double my Levo from 100 to 200mcg, that would be madness.
My surgery will do routine blood tests so I don't know why yours wont do you a thyroid test when you feel unwell and it's probably connected.
You can always do a private test, there is an NHS lab which does the basic TSH, FT4 and FT3 for the general public, fingerprick test, £26.10 with code:
They are fobbing you off. I've had thyroid bloods done repeatedly though Covid and an ECG for my arrhythmia. I've had a face to face consultation to discuss results too.
But to be honest, you will get a better test done if you do the one SeasideSusie listed. The surgery will only do you a TSH test I expect.
I was wondering if you'd had your B12 tested Jelley93?
Balance issues, dizziness and proprioception are strong neurological symptoms of B12 deficiency. Research shows that 40% of those with thyroid disease go on to develop B12 deficiency and vice versa (three in our family have both).
You could try writing to your GP listing full symptoms together with latest BMJ research document summary (full document behind a paywall) below asking for a telephone appointment, with someone close on standby for extra support:
*Neurological symptoms should be treated without delay with B12 injections 'every other day until no further improvement', to prevent permanent damage'.
Hi polaris Ive not had a b12 test. Although I take a vitamin B complex with B12 daily. However I guess that might not be sufficient. Ive been fine for 3+ years. Yet on thursday the unbalanced feeling just started up again. Not major but it is there. My hypothyroidism was caused by Glandular fever in 2017.
Hi Jelley It's a v. difficult time to be ill at the moment, especially with these symptoms and the complexity of PA/B12 def. I'm obviously not a medic and things are complicated by thyroid diagnosis, although many of the symptoms overlap. You'd normally need to see a neurologist.
Sadly, tests for PA/B12def. will be skewed if you've been taking supplements but, as you'll see from the BMJ document, there is no fully reliable test! B12 tablets may not have been absorbed (only around 1%) if you have any problems with stomach acid (v. common with thyroid disease, another term for PA being autoimmune metaplastic gastritis.)
Our family experience is that all neuro symptoms became much worse after a debilitating virus and any extreme exercise and stress seems to aggravate B12 deficiency. Martyn Hoooer, chairman of PAS, writes that many people have been misdiagnosed with ME and this hapoened to my relative.
If it were me, until better medical access is available, I'd rest as much as possible and try self injection or small, frequent daily doses of a new Lipolife liposomal form of B12 (put v. simply, it's B12 in a bubble of oil that's supposed to allow the B12 to enter the cells directly, avoiding the usual route). I've been trying this as a supplement to self injection and, so far, it appears to improve energy but it is more expensive than injections.
The risk in going down the self supplementing or self injection route is that it is then far more difficult to get a diagnosis, but better i.m.h.o. than becoming permanently disabled, as you cannot overdose on B12.
I hope you can find the right treatment soon......
Hi again, I have basically felt like this since 22/04/2021. I have a Drs call later on today. However I have been tracing my steps back and I now think I know the issue. Last year I was diagnosed with LPR reflux and was prescribed Lansoprazole. That was back in January 2020, I have now found out that Lansoprazole stops Levothyroxine absorbing into the body properly. I feel exactly like I did three years back when I was first put on Levo. So I think I may have to start from scratch. Hopefully my GP can help me
I rang my Dr today asking for either a blood test or medication review. Cannot have either at the moment due to covid and telephone calls only.
That’s ludicrous. Of course you can have thyroid and vitamin levels tested
Private testing if GP remains obtuse
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Any PPi like Lansoprazole will significantly lower vitamin levels
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Which brand of levothyroxine are you currently taking
Do you always get same brand
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Always have mercury pharma levo. When my Dr rings in about an hour. I'm going to demand blood test. Possibly emergency a box of 25 mg levo too. I'm off sick today as basically I can't function at the moment.
I just don't understand really. It's so frustrating, I've been relatively stable for three plus years then all of a sudden. My world is turned upside down. I really appreciate the advice. Is that what can happen though your feeling fine then suddenly you become under medicated. Leading to the unbalanced feelings I had three years back. I'm hoping I can get better asap due to trying hold down a job
Im a man, anyway I have a blood test booked for next Tuesday. They originally said 11/05/21. I told them I can't wait that long. Now im off sick for a week im also going to try and space out my levo from my breakfast. The past three years I have always took levo straight after my breakfast due to the fact I leave for work around 630 am. Hoping may see a slight improvement in the next week. Thank you for you assistance
You need to click the reply button...otherwise person doesn’t get notification you replied
Please add that you’re male to your profile
9 out of 10 thyroid patients are female, so it’s often assumed female, unless forum name is obviously male
100mcg levothyroxine for male is low dose
Do you always get same brand levothyroxine at each prescription
guidelines on dose levothyroxine by weight
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
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.
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.
95.25kg- 15 stone. Its funny because I am a very active person. I cycle to work daily around 5 mile, plus at weekends I try to do 20 miles. However I can't lose weight. It remains around 15 stone or just below. With this latest flare up it is just the unbalanced feeling I am getting.
Do you reckon when I have my blood test. Id be able to request a box of 25mcg to get the ball rolling. I know they are always going on about we have to see your results first. However Im pretty certain like you say I need an increase. Last time in 2018 when I last felt like this my medication was raised from 75mcg to 100mcg. Then I felt fine up until now.
Yes I will try and get a box straight away tomorrow after blood test. Slow Dragon you've gave me a lot more insight than my Drs would. Thank you so much. Oh yeah just one more question. Once I have the blood test will the new results be uploaded to the nhs online record system the same day? If so ill post them onto this thread
Personally I only get tested privately as NHS rarely tests Ft3 (even when patient is on T3!) and rarely tests vitamin levels. I give copies of test results to my GP. Not the other way around.
So I had my blood test yesterday and awaiting the results. I tried and tried to get a box of 25mcg to start all i got was we have to see the results first. So I had to extend my sick as I am not suffering at work. I told her straight my TSH was too high. To which I got told 5.2 wouldn't really concern us.
On levothyroxine TSH must ALWAYS be under 2.5 as absolute maximum
Many thyroid patients will have TSH well under one when adequately treated. Most important results are ALWAYS Ft3 followed by Ft4 and all four vitamins optimal
Levothyroxine doesn’t top up failing thyroid it replaces it which is why there’s guidelines on dose by weight
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that 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
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
You may need to see thyroid specialist endocrinologist to make progress, if you can’t see a GP who’s actually read guidelines
There’s almost 2 million people in the U.K. prescribed levothyroxine, but currently testing, treatment and understanding of hypothyroidism is frequently woefully inadequate
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one.
Most important results are ALWAYS Ft3 followed by Ft4.
When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
You really, really don't want to try dealing directly with a private hospital to get blood tests done. The cost is likely to be astronomical.
There are quite a few companies that deal directly with the public, and they tend to be much cheaper. I remember answering a post once where someone had contacted a private hospital or doctor, asked about tests they wanted done, and the cost was close to £1000, including seeing a doctor. I looked up how much it would cost to get the tests done privately without seeing a private doctor and it was £79.
Started the 125mcg dosage today. The 25mcg box is wockhardt. I had a metallic taste in the mouth but soon faded. Lets hope I start to feel somewhat normal.
Hello today I took my third dose of 125mcg. Well spaced out from my breakfast. I am beginning to notice slight changes. Less dizziness however still there a bit. My current sick note expires this Thursday. I was just wondering maybe a daft question whether the increased dose would make me feel better within one week. So I could return to work.
Can you perhaps discuss doing shorter hours for few weeks
usually notice improvements after 10-14 days on increased dose .....goes on improving for several weeks
If you need further increase in levothyroxine (likely) then you may start to notice return of some symptoms after 6-8 weeks as body gets ready for next dose increase
Bloods should be retested 6-10 weeks after each dose increase
Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
My main role is driving a van. Not very hard, however there is some physical elements as we are now dealing with pallets off PPE etc. Yesterday I went on a bike ride around 7 miles. I was okay after. I try to keep fitness even with the thyroid. It tends to help me ward of tiredness etc
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