Hi everyone,
just been to my private endocrine review, I’ve been told that my symptoms are not related to my thyroid. He was absolutely adamant and said my thyroid function is perfectly normal It’s been suggested that I may have chronic fatigue syndrome! He also suggested a referral to neuro due to me feeling constantly off balance.
Any thoughts please?
Was this an Endo from the Thyroid UK list?
Before seeing a private Endo you can make a post on here asking for either recommendations for one or if anyone has seen the one you are booked with and if they would recommend. Your post will be closed to further replies as we are not allowed to discuss doctors in the group. People will reply to you by private message only.
You could do two things. Find a better Endo or persevere more with your GP. Taking them printed information about getting a dose raise, being a little persistent and trying different GPs at the same practice for better answers. As hypo patients we do need to become our own health advocates.
Most Endo's are diabetes specialists and they have little interest/knowledge about hypothyroidism. Some are also just not very nice either!
Meantime are you working on your low vitamin levels?
I had the list but there was nobody in my town listed. I took a copy of my recent bloods and he said all was fine and that it also shows I don’t have any antibodies anymore. I’ve bought a Betteryou D3000+K2 spray.
He also said that research shows there is no real benefit in treating people with sub clinical hypothyroidism with Levothyroxine. I said my symptoms improved 2 years ago when I started and that symptoms returned when they changed my brand. So if there was no point prescribing, how did I feel better, and symptoms return with a change of brand?! I’m so disappointed!!
I think many people expect a lot of Endo's as it is allegedly their speciality but frequent disappointment results from this. It's often better now you have found this group to try and follow advice here and plough on with your GP/s, trying different GP's and getting a bit more confident to tackle them on what you want/need.
You can easily ignore pretty much all he's said really.
SeasideSusie made a very long response to yuor very low vitamin levels which in their own right will be making you feel awful. There were a number of suggestions that she has made which are very important. I suggest you re read her replies as there were several other things to do other than the vit D spray. healthunlocked.com/thyroidu...
Some Endo's/practitioners work online by the way. Look out for ones that do Zoom consults.
Thank you Jayden. I was beyond grateful for seasidesusies replay and advice, however wanted to see what the endo said today, incase he recommended further tests/medication increase before asking the GP for full iron panel and B12 bloods. I started off on the Vit D as she suggested only starting one at a time, I was then going to add supplements depending on bloods.
So you've got plenty to work on for the mean time. I'd make that appointment with your GP now to discuss iron/B12/folate.
Your results in last post showed low FT3.
If levels aren’t right for you, more than likely thyroid symptoms. I find symptoms linger a little beyond the time you would expect, so even with good levels, symptoms can last a few weeks longer as of the body is still catching up or recovering.
Many of us experience this. Doctors will look at results & state if anywhere in range nothing to do with thyroid. I also find specialists will say symptoms are nothing to with thyroid but GP will put everything down to thyroid ie ….. what ever it is, it isn’t their job to investigate & treat.
he’s adamant it’s not the thyroid and referring with for a neuro opinion. Ugh!
Maybe the 'neuro' might agree with you rather than what the Endo stated.
My TSH was 100 and the GP still phoned to tell me I had no problems with my health.
I was very fortunate to find Thyroiduk's site (before healthunlocked) and it enabled me to restore my health.
I was also able to consult with two knowledgeable doctors (who were trained on how to diagnose/treat a patient who had hypothyroidism - through signs and symptoms alone) and before levothyroxine was introduced.
These two doctors (Dr Barry Peatfield and Dr Gordon Skinner - now deceased) were pursued as if they were criminals and it caused both unnecessary stress/strains as they had treated their patients as they were taught but declined to follow the new 'guidelines'.
I was fortunate to consult with both of those doctors and it was a wonderful experience i.e. both were kind and knowledgeable. Best of all they knew how to restore their hypo patients' wellbeing.
This is an extract from the following link:-
"DESPERATELY ill Lorraine Cleaver planned to end her life after a thyroid operation left her sleeping 20 hours a day and unable to care for her young son.
She was on a cocktail of 18 drugs a day, lost her hair and became obese . And she even feared her illness was damaging her son Drew’s health.
For six years, doctors refused to acknowledge her symptoms were down to the removal of her thyroid.
And fearing she would never become well, Lorraine set a date in her diary for a month away when she would take her own life.
But then her husband Gavin, 44, found charity Thyroid UK online and Lorraine discovered others had felt the same agony and despair as her – but had got better. "dailyrecord.co.uk/news/real...
thank you for your reply. People have been very kind taking the time to write with advice. I’ve just read that awful article, that poor lady. It’s awful how people are being treated and ignored!!
We are unaware of how many people are struggling when they've been diagnosed as being hypothyroid.
Like many people I had never heard of that condition before I was diagnosed. The pity is that few GPs or any other doctor I paid for a consultation - not one gave me the correct diagnosis. (I've put my history into my page and - if you wish - you can read my history by click on my name).
With the health/advice you're given on this forum will help you onto your recovery.
previous post
healthunlocked.com/thyroidu...
FT3 only 21.62% through range
FT4 only 45% through range
both far too low.
Get GP to increase your dose levothyroxine to 75mcg
Vast majority of endocrinologists are diabetes specialists and as demonstrated by one you just saw……utterly useless for thyroid
If GP won’t increase levothyroxine
List Specialist thyroid doctors and endocrinologists
healthunlocked.com/thyroidu...
Meanwhile essential to improve all four vitamins
Vitamin levels are terrible BECAUSE you are on too low a dose levothyroxine
Ferritin 31 (30-150)
Optimal level at least over 70 minimum
Folate serum 5 (8.83-60.8)
Folate deficient. Aiming for at least over half way through range
Vitamin B12 Active 41 (37.5-188)
B12 extremely low/deficient.
Aiming for Active B12 at least over 100
or
Serum B12 (NHS testing) at least over 500
Vitamin D 37 (50-250)
Vitamin D at least over 80nmol minimum
How much Better You vitamin D are you taking
red bottle with k2 - one spray = 1000iu
Suggest you take 3 or 4 sprays per day and retest in 2-3 months
Also need to look at taking separate magnesium supplement. Afternoon or evening…..at least 4 hours minimum away from levothyroxine
Has GP done test for Pernicious Anaemia BEFORE starting you on B12 supplement or B12 injections ?
You should start B12 injection or daily supplement at least a week BEFORE Starting on folic acid supplement
Folate deficient. But you must start B12 FIRST
GP also should be doing full iron panel test for anaemia
Ferritin 30 or less is deficient
Meanwhile look at increasing iron rich foods in you diet everyday
Levothyroxine doesn’t top up failing thyroid……it replaces it
50mcg is only the standard STARTER dose
Dose should be increased upwards in 25mcg steps until Ft3 and Ft4 are at least 50-60% through range and all symptoms resolved
Typical eventual daily dose levothyroxine is approximately 1.6mcg levothyroxine per kilo per day
Unless extremely petite most people will be on at least 100mcg levothyroxine per day
Approximately 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.
Hi Slowdragon,
Many thanks for your reply. Weight is approx 73kg, I used to be stable around 60kg. I take 3 sprays of the D3/K2. I will purchase some magnesium and start taking over the weekend.
Unfortunately there is no way my GP will increase my Levothyroxine, so I’ll have to travel further a field for another review. Thank you very much for taking the time to reply.
Roughly where in U.K. are you
Increasing numbers of thyroid specialists will do consultations on zoom
First steps with GP this week
Try different GP
Email in copies of these results BEFORE phone/face to face consultation
Point out that tests show
FT3 only 21.62% through range
FT4 only 45% through range
Plus copy of Nice guidelines on dose by weight
request 25mcg dose increase in levothyroxine as “a trial “ increase
Request/insist on B12 and folate test on NHS
Folate serum 5 (8.83-60.8) - deficient
Vitamin B12 Active 41 (37.5-188) - extremely low
Any active B12 under 70 should have further testing as considered too low
GP won’t have any experience of Active B12.
NHS only tests serum B12
Don’t start any B vitamins before test has been done
Ferritin - under 30 is deficient
Request full iron panel test for anaemia
thank you Slowdragon. I’m in South Wales. I’ll put a request in to my GP in the morning. Fingers crossed 😕
Oh dear, poor you! I've seen endos like that. They haven't got a clue!
When a doctor says 'normal', all he means is that your blood test results are somewhere within the so-called 'normal' range. But, that's not always good enough. It depends where within the range the results fall. Yours are too low within the range for you - we're all different. But, I doubt anyone would feel good with an FT3 as low as yours.
He's talking out of the back of his hat when he states that your symptoms have nothing to do with your thyroid. Anything and everything can - and often is - to do with the thyroid because every single cell in your body needs thyroid hormone to function correctly. So, if there's not enough T3 to go round, then problems can crop up in the most unexpected places - it's not like breaking your leg where the pain is confined to the broken bone, the pain of hypothyroidism can be in your big toe or any other part of your body, a long way from the actual thyroid. So, the only way to know if a symptom is due to low T3 is to see if it goes away when you raise the T3 level - as you found out.
As to antibodies, they fluctuate all the time. And, levels get lower with time, as more and more of the thyroid is destroyed. So, the fact that they are within range on a given test does not mean your Hashi's has gone away, Hashi's never goes away. It just means you're going through a quiet - possibly euthyroid - period. But things could go haywire again at any moment. That's the nature of the disease, and he should know that. If he doesn't, he's not worth consulting, and is more than likely a diabetes specialist. Just put ignore him, put that consultation down to experience, and move on. He can't help you because he doesn't know enough about thyroid. 
thank you very much for your kind reply greygoose. I feel like I’ve been kicked in the teeth. I’ve been so upset all morning, as really thought I’d get some answers today 😔
Mere hypothyroidism is a down graded specialism. Even within its own department it seems like “whose unlucky turn is it on thyroid outpatients clinic today?” So many brains (ha) so little sense!
If GP won’t test B12 and folate
Do you have any Low B12 symptoms
List them to GP if you do
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and then start a separate vitamin B Complex after a week or so
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Very effective B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Other options
healthunlocked.com/thyroidu....
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
A new review published
Thyroid review appointment system
Help with medication review
Petion for review of UK thyroid guidelines.
