Hi All,
So my 8 weeks blood results are back. Gp called me and said to continue 50mcg levothyroxine. Do let me know if its ok. I really appreciate all your inputs and guidance Xx
Thyriod function test - (GH1) - Normal - No Action
Serum TSH - 2.43mIU/L (0.34-5.60mlU/L)
Serum free T4 level - 10.5pmol/L (7.50-21.10pmol/L)
Serum vitamin B12 - 242ng/L (187.00-883.00ng/L)
Thank you so much!
I think you need a further increase of 25mcg because your TSH should be 1 or lower. Also your T4 should be in the upper third of the range. Why is your GP keeping you on a starter dose?
Thankyou Lora7again Xx The GP doc said i did not need further action. Since this is all new to me i just listened. I have been struggling with severe pain in Sacro joint and my Knee joint lately so was at physiotherapy and requested for the results..I've been checked for Rheumatoid Arthritis and the levels are 0.5 U/ml (0.00-5.00U/ml)
Another discomfort im struggling with sore left breast which swells up like a balloon and i've checked for lumps but none i could find but felt very hard in some areas of the breast..
Is this anywhere linked to hypothyriod? I will call the GP and request them to increase my dose. Hopefully they do.
Hopefully one of the admins will give you some links that you can show to doctor who clearly doesn't know how to treat hypothyroid.
I do have this one that SlowDragon gave me
Thank you Xx
Actually that is not working for some reason but I have printed it off so hopefully someone will give you the correct link.
Try this link
nice.org.uk/guidance/ng145/...
Thank you il go through it xx
this might be of help
rheumatologyadvisor.com/hom...
Thyroid hormones do affect joints and muscles, so since you could increase dose without taking TSH under range and your FT4 is too low in range, there seems to be no reason why GP could not increase dose and see if it helps with knee /sacro issues.
This may help too
healthunlocked.com/thyroidu...
Notice how TSH around 1 is much more 'normal' than 2.5
P.s i have sacro and knee issues too, good physio is helpful, get them to show you core strengthening exercises for sacroilleac pain, it fixed mine.
My levo was reduced at end of last year and my bursitis came back on my knee, possibly coincidence , possibly not...
noteboo
Serum TSH - 2.43mIU/L (0.34-5.60mlU/L)
Serum free T4 level - 10.5pmol/L (7.50-21.10pmol/L)
Gp called me and said to continue 50mcg levothyroxine.
The GP doc said i did not need further action.
GP doesn't know how to treat hypothyroidism. The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their reference ranges (FT3 being the most important result, that's the one which tells us if we are overmedicated).
Show the following to your GP:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine for doctors):
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
Serum vitamin B12 - 242ng/L (187.00-883.00ng/L)
This is very low although your GP will say it's within range. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
pg/ml and ng/L are the same.
Do you have any signs of B12 deficiency – check here:
b12deficiency.info/signs-an...
b12d.org/submit/document?id=46
If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.
When testing B12 we also need to test Folate level as B12 and Folate work together.
Have you also have vitamin D, folate and ferritin tested?
B12 is far too low.
Need folate result too ideally before starting on supplements
your results show you need 25mcg dose increase in levothyroxine and bloods retested 6-8 weeks later
guidelines on dose levothyroxine by weight
Even if we 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 on 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.
gp-update.co.uk/Latest-Upda...
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.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
When you get next blood test
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 did your latest tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Come back with new post once you get vitamin results
Refused to do Vit D test abd said in britain everyone suffers with low levels... and advised to get some from boots ..
So get NHS postal kit here
Important to know exactly how low vitamin D is
Likely to be deficient as you are so under medicated......in which case GP should prescribe LOADING DOSE if Vitamin D is under 25nmol
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
ncbi.nlm.nih.gov/pubmed/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol
grassrootshealth.net/projec...
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
With your Vit D, are you also taking it's important cofactors - magnesium and Vit K2-MK7?
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
Thank you all... I'm sorry i haven't got back to you individually. My GP did not agree with raising my levothyroxine from 50mcg and would not listen to me the facts you all gave me to share. It was telephonic for one.. He said my levels were within range abd according to NHS guidelines he has to continue me on 50mcg for next 3 months.
I have been struggling with real bad stiffness in my left knee and the sacro joint as well. It feels like i've been hit by a truck. The physio is not helping at all and this week i developed pain in my mid back and radiating to my ribs. I have been referred to spinal clinic but not heard anything yet.
The other problem related to my breast which appears very dense and painful was told that was due to levothyroxine and that was another reason that screams not to increase my dosage according to gp.
Sorry lovely people i'm really sad and just feel like im spiralling down and i really dont know what's happening with me. Also, got 2 nodules pea sized on my finger dont know where that came from and gp is not concerned about that. In the end i've been told its a difficult time with covid and everything is getting pushed back so to be patient...
In the words of my gran... there's more than one way to skin a cat, (or was it a rabbit , i forget!)
when i first started levo i was told by gp that dose would have to be increased over time as my thyroid failed , and so if i remember correctly, i didn't wait to be told or allowed to increase, i had a blood test 6 weeks after taking the initially prescribed 50mcg, it was 'normal ' TSH 2.9 , down from 6.8 at diagnosis, since i had felt a lot better for a little while but then less good on the 50 i put the dose up myself to 100 following that blood test and just put in early for repeat prescription, no one said i couldn't, and no one seemed to be counting when my prescription was due. The next blood test , i told the nurse i was taking 100 so they knew, and it also showed 'normal' 2.5, so gp had no grounds to tell me to reduce. Notes say "she had increased dose herself to 100mcg"
I carried on doing it this way for about a year and a half, until i was on 175, before gp said i was on too much due to low tsh and over range ft4, at which point he sent me a firm letter that dose was to be no more than 150 mcg.
This was in2004 . so i don't know if you'd get away with this sort of behaviour so easily nowadays with more computers being involved in repeat prescriptions etc , but honestly , i think it would be a while before anyone pays too much attention to when you ask for a repeat. And it should be easy to get a blood teat on a new dose , since they could hardly refuse if you told them you had been taking a higher dose for 6 weeks.
If i were you i'd put it up myself and see if i felt better and tell em about it afterwards. If the next blood test is in range they would have to justify reducing it.
Some may say this is irresponsible advice, if so i'm happy to be told off, but;
You have seen your TSH is ok and could safely go lower , you have seen your Ft4 is far too low and could safely be higher , so you are not being irresponsible .
I've never heard of any connection between breast swelling /pain and levothyroxine , so you should research that first to be on the safe side , but it sounds like bunkum to me .
If you have no heart issues and you are not elderly ,why not put it up by 25 mcg yourself ?
NOTE i now know that 50mcg increase is not a good idea in one go, so don't recommend you follow my example in that , and if you are elderly or have heart issues then ignore this reply, it's not for you, but i note from previous posts you had a baby about 5 yrs ago, so if you are elderly and managed that congratulations 
We cannot play around with medications we are prescribed from our GP practice as repeat prescription requests are date-limited, whether we do it online or ask for paper ones. All meds are now being carefully monitored, and I have also been recently questioned by the pharmacist about medication I was collecting as it had been flagged up as concerning on their system.
True , but like i say, there's more than one way to skin a cat, over the years i have been prescribe extra to go on holiday ,and because i left it at my mums house, and because it got lost with my handbag. there must be some leeway in the system to allow for such instances, at least occasionally. To be clear, i'm not suggesting lying to gp here , just do it first and tell em later and let em check bloods on higher dose.
You could probably get away with concocting a story once, but this would involve contacting the GP directly for them to be able to override the system, and it would then be put on your records. Not a viable modus operandi for repeated use.
None of mine were concocted stories , people with chaotic busy lives lose things all the time, and if a patient on lifelong medication runs out for whatever reason, surely they can't refuse to provide it .
I think there is a big difference between my suggestion to responsibly increase dose based on results, (after taking into account age , heart risks, and checking out a suggested connection to breast swelling) and your phrase 'playing around with medications'. I would never suggest anyone play around with medications, after all , we are not children are we.
I didn't mention "playing around with medications". My earlier comment was simply concerning the impossibility at many practices, like mine, for ordering more medication than needed, and keeping some by, or for requesting meds before the due date. As I said, I would only be able to obtain an extra month's supply by contacting my GP with a reason for having mislaid/lost my meds, and this would be put on record. I made no comment at all on the advisability or otherwise of anyone adjusting their dosages without the knowledge of their GP; that would be up to the person concerned.
i think it would be a while before anyone pays too much attention to when you ask for a repeat.
Sadly, this won't work nowadays. I have three prescribed items in my repeat prescription list. I try to order them all at the same time but I get different numbers of each one, so eventually they go out of sync.
One day I ordered all three (online in Patient Access), but ordered one of them a few days early. My request was denied. What was annoying was that nobody told me that was the case, and it was only because I checked to see if my request had been approved that I realised there was a big red X next to the one I had ordered two or three days early.
Fairynuff.... how annoying Presumably this little money saving exercise actually costs more due to having more transactions between gp, chemist, and you ? or is there no time cost attached to these things.
Well, now that repeat prescription requests have been computerised, the cost of producing such a repeat prescription will be extremely low - probably close to zero.
The person who gains the most from this financially is the pharmacist who dispenses the prescription I suspect.
But for the doctors, it means that "Computer says No" has been built in and requires no effort at all. And they never have to see the patients after the initial prescription. (My repeats are checked and reapproved once a year and the job has been taken over by a pharmacist who works for the surgery.) So, for the doctors, a win-win too.
For patients it means that prescriptions are easier to get as long as we never have to change anything. The system is absolutely rigid.
Oh ,My Luddite defence mechanism of insisting on pen and paper for everything is crumbling before me .... things are gonna get really silly when there's a power cut or a cyber attack.
please can we put the clocks back to 1975 ? i'd be much happier with things.
First step is to get vitamin D tested
Come back with new post once you get vitamin D results
Supplementing to improve
Work on improving low Vitamin B12 too
Then recommend getting TSH, Ft4 and Ft3 tested via monitor my health (currently testing is temporarily on hold due to supply issues)
Always do all thyroid tests as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Only test on Monday or Tuesday morning and post back via tracked postal service
Getting vitamin levels OPTIMAL helps raise TSH so that dose levothyroxine can be increased
If GP still won’t increase dose levothyroxine
So you will need to see different GP or go directly to an endocrinologist over GP head
50mcg levothyroxine is only a starter dose
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of where TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
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
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Are you currently taking Teva?
Teva, Aristo and Glenmark are the only lactose free tablets
healthunlocked.com/thyroidu...
Teva poll
healthunlocked.com/thyroidu...
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Thank you lovelies xxx Reading your comments made me chuckle and got me smiling. Appreciate all your suggestions. I think il be cheeky as another doctor in same gp is checking on my breast query.. i will talk to her and request her to raise the levels. I will get the VitD test done and come back in a new post.
Whenever is the spinal clinic appointment i will update you guys on it as well! Thank you so much 💕
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Blood test results back; no effing chance of a levo increase :(
Blood test results help please
