I feel awful, I’m on 50mg of levo and have been for 5 years. Like many of you my TSH is only checked by the NHS and always considered “in range” In recent years when I’ve visited my GP about thyroid health, bloods are done and my thyroid gets lost in translation because I have too high Vit D and high iron levels. I don’t take supplements for either. According to my bloods I’m in renal failure stage 2 and non-alcoholic fatty liver disease. I don’t drink and haven’t for more than 25 years and do my best to eat well. Last week I waited to see the only GP I respect and trust, he is very straight and honest with me about his limitations on the NHS but assured me if I have the means to go private I should and if I find alternative drug that improves my thyroid health backed up by written confirmation from my private endo he will support my prescription on the NHS. I’m in Edgware, London. I drive so willing to travel a reasonable distance. Anyone with good experience of a sympathetic and proactive endo who changed their life and willing to recommend them? I’m a single parent to a little boy with additional needs, I need to feel better
Private Endo recommendations please: I feel awful... - Thyroid UK
Private Endo recommendations please
50mcg levothyroxine is only the standard STARTER dose levothyroxine
First step before booking any consultation is to get FULL thyroid and vitamin testing done
You already know you have Hashimoto’s
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Email/see GP and request Ft4 and Ft3 tested and vitamins
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
what vitamin supplements are you currently taking
Please add most recent thyroid and vitamin results and ranges
Recommended that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
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 all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3 and includes BOTH TPO and TG antibodies -£29
randoxhealth.com/at-home/Th...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Tips on how to do DIY finger prick test
Poor kidney function likely directly linked to being on inadequate dose levothyroxine
As SlowDragon has advised, get full thyroid tests and key vitamins tested, then post these on the forum for further advice, before considering paying to see an endocrinologist.
I only started to feel well when both thyroid medication & key vitamins were optimal & it’s important to know that ‘optimal’ is not the same as bloods being ‘normal’ or ‘within range’.
We are here to help & support you CaroMaxx, so keep posting if you have further questions 🦋
For full Thyroid evaluation look to test:
TSH
FT4
FT3
Plus key thyroid vitamins:
Vitamin D
Vitamin B12
folate
ferritin
If your GP is unable to test all the above, look to do this privately, as many members here do.
Thank you to everyone who has commented on my post. Here’s my NHS blood results for April 23 and March 23. I have another blood test booked on the NHS for 30 May 23. I’ve booked a private blood test with medichecks but I didn’t want the blood results to be too old before booking a private Endo appointment hence my post asking for Endo recommendations so I can coordinate blood test and private appointment.
I think for now I’ve got as far as I can with the NHS so I’m willing and fortunate through saving able to go private. I just want to feel well to give my best to my 5 year old
will tag SlowDragon so she knows vitamin / TSH results now added.
sorry I can’t see how to post more than one image at a time so this is not all the blood results I have. I think I’ll just write them out in a separate post
you can only add one image per reply . so just add the other images in further replies to yourself
blood results
bloods
March results
March bloods
last image
one last comment on the high Vitamin D… I have Indian origins so really strange for me to have high vitamin D when most people of my ethnicity have a vitamin D deficiency 🤷🏽♀️
Yes that’s odd
Are you supplementing any vitamins at all?
No Ft4 or Ft3 results
TSH is too high
TSH Was test done early morning, around 9am
Push GP for 25mcg dose increase in levothyroxine NOW
Or test TSH, Ft4 and Ft3 NOW ….likely low Ft4 and Ft3
Assuming GP will increase to 75mcg per day
Initially suggest you ONLY increase by 12.5mcg for 4-6 weeks before increasing to 75mcg daily
Which brand of levothyroxine is your 50mcg tablet
Don’t change brand when increasing dose
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
NHS England Liothyronine guidelines July 2019
sps.nhs.uk/wp-content/uploa...
See page 13
1. symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Approx how much do you weigh in kilo,
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
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...
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Prof toft quote
healthunlocked.com/thyroidu...
from PULSE magazine for GP's... The article is available from ThyroidUK
If you want a copy of the article then email tukadmin@thyroidUK.org
and ask for a copy of the Dr Toft article in Pulse magazine. The quote is in answer to question 6.
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)."
Have you had cholesterol levels tested?
Cholesterol tends to be high when hypothyroid and low when hyperthyroid
nhs.uk/conditions/statins/c...
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
thanks for your reply SlowDragon
I’m a bit overwhelmed by all the information but will break it down and plough through all that reading material. I’ve attached my latest cholesterol test back in March. I think I only spoke with the pharmacist about it, they weren’t too concerned at 5.4 . I’m always left feeling like they think it’s as simple as I eat too much when in fact I often restrict myself to many foods.
My last blood test was taken around 10.15am. My next blood test is booked for 8.40am on 30 May with hopefully at least a T4 along with TSH (NHS)
At the time of taking the previous bloods the only supplements I took were Stabilium (natural dietary for stress and anxiety) and a strange one a keto supplement. I’ll post pictures. There was a reason for taking the keto supplement. I started taking it because I wanted to speed up my metabolism but later found when I stopped taking it I was in a great deal of pain, especially around my back and kidney area so I just continued to take them. I’ve stopped taking them again and this time I still have kidney pain but only when I wake up in the mornings. Once I’m up I drink and I’m ok. I don’t think that’s normal though.
I’ll have to look back to see what other questions you’ve asked. These were the only ones I could remember
this is the stabilium
aside from the caffeine I felt like the other ingredients supported my thyroid health 🤷🏽♀️
Almus
This week I started to have bone broth once or twice a day and started to take milk thistle. This morning I woke up feeling warm, not quite hot and sweaty (I can’t remember the last time I sweated) but feeling warm is progress for me, I’m also currently gluten and sugar free. Im also trying very hard to balance my sugar levels. My mood isn’t as low I noticed so all these interventions are hopefully working but only time will tell. I will book my medichecks blood test this week so I’ve got the results to take to my GP at my next appointment on 7 June when I will ask him to up my Levo by 12.5mg and review again after 6-8week. I’ll hold fire on finding a private Endo for the time being
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots,
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome. But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva is the only brand that makes 75mcg tablet.
So to avoid Teva for next increase to 75mcg dose ask extra Almus 50mcg tablets to cut in half to get 25mcg extra per day
Aristo (currently 100mcg only) is lactose free and mannitol free.
March 2023 - Aristo now called Vencamil
healthunlocked.com/thyroidu...
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
List of different brands available in U.K.
Vitamin D
Are you taking any other supplements other than Stabilium
Or any other medications
medicalnewstoday.com/articl...
Some prescription medications used to treat high blood pressure (thiazide diuretics) and heart diseases (digoxin) can cause an increase in vitamin D in the blood.Estrogen therapy, taking antacids for a long time, and isoniazide, an antituberculosis medication, can also cause elevated levels of vitamin D.
Ferritin
Are you pre menopause
Raised ferritin more common after menopause
Ferritin can be high due to inflammation
other than the Keto and Stabilium which I’ve mentioned, I’m not taking anything else. I’m not even taking either of these now but I appreciate the blood results I’ve posted reflect the time I was supplementing
I still have periods so I’m perimenopausal but certainly not through the menopause yet, I’ll be 50 in November. So high ferritin levels are a mystery to me. I don’t eat huge amounts of red meat, several times a week maybe
I’m unsure how I’ll get on with changing brand of Levo but I’ll try. My medication is dispensed at my local Morrisons supermarket pharmacy
Don’t you normally get Almus?
yes I’ve been getting Almus for as long as I can remember
So explain you don’t want to change brand of levothyroxine
So for increasing dose to a total of 75mcg per day request prescription for 14 extra 50mcg tablets every 28 day - explain that you will cut half to get 25mcg
Otherwise if GP wrote prescription for 75mcg it would be Teva
And if it was prescription for 25mcg it would be Mercury Pharma, Teva or Wockhardt
thank you so much SlowDragon
Is there a chance that my ferritin and vitamin D will correct themselves once I’m correctly medicated with Levo?
With such a high ferritin level, have you ever been tested for hemochromatosis? It is a genetic disorder that runs in families. My brother and his twin daughters have it. It is where your body stores too much iron. The treatment for it is simple. They just have to have blood removed once in a while. It can make you extremely fatigued. You may want to look into it. It can cause all kinds of liver issues if untreated. It is fairly rare, so doctors don't think about testing for it.
I was tested for it because of my severe fatigue and that I have a sibling with it. I don't have it and my fatigue is just untreated hypothyroidism, which I am working on.
Trina64 thanks for your message. I referred to Dr Google when I had regular bloods showing high ferritin levels and I think came across hemachromatosis but it’s almost like the NHS weren’t too bothered about investigating so I didn’t worry either. I will make a note to push my GP for testing/diagnosis especially if it means that all I need to do is give blood now and again to bring my levels down. Giving blood doesn’t phase me.
ferritin would need to be much higher (over 600) before GP would consider hemochromatosis
This explains why the NHS weren’t too concerned
You would need your transferrin tested to confirm you have it. I am in the United States, so maybe it is more apt to be tested. The way my brother and nieces found out was after one niece gave birth, her iron levels were crazy.
My brother has always been a regular blood donor, so that may be why he never had issues with it. If you can't get tested, you could try just donating blood and see if that helps you feel better. When my ferritin was over range, that was what was recommended to me.
Fatigue and brain fog are their worse symptoms. They all struggle with anxiety as well, so I don't know if that has anything to do with it as well. They has to have blood taken quite a bit at first, but the last time I talked to one niece, she just has to donut every 6 months now.
One more thing, I had fatty liver disease as well. I was having side pain, so a liver scan was done and that was how it was detected. I was told to stop drinking alcohol and like you, I don't drink. I was told that i had to be a drinker. Grrr! I see that you are gluten/sugar free. What about other carbs? I reversed my FLD, by reducing carbs and increasing the good fats (olive oil, coconut oil, avocados, etc) and in my last liver scan, it was completely gone. I don't know how much non- or under treated thyroid play in non-alcoholic liver disease.
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