I had an unexpected telephone appointment yesterday with my endocrinologist, so quickly gathered my questions together while he introduced himself. As I had increase in Levo in February which takes me to 75mcg and after my most recent bloods, which I paid for, I was quite confident that he would increase it further but no! He cut me off at every junction, every question I asked him he had an answer for, that didn’t correspond with what I was saying, the whole time I was on speakerphone so that my husband could hear and would understand the problems that I encounter with the endos. My last TSH, that he kept referring to, had reduced, from 4.48 to 2.75, yes it had and that was due to me encouraging my GP to increase my Levo but he insisted that he didn’t want me to get ahead of myself and get into a hyper situation!!! What? I haven’t got much of a thyroid left if any at all to go hyper, after 2 partial thyroidectomys and ablation! But he was very insistent that he was happy to keep me on 75mcg for at least the next 6 months to let me ‘settle’. He obviously didn’t want to talk about my vitamins, irons status etc as he thought they were ‘good’, I asked for an iron panel and he didn’t see the need. I mentioned that I am now tipping the scales at 11st and he suggested a dietitian!! So all in all saying that I feel deflated is a massive understatement. I have a telephone appointment with my GP on Monday, which I already had prebooked and I had every intention of asking him to up my Levo but that probably won’t happen, so I’m going to ask him if he will do me an iron panel, it’s worth a try but I’m not holding my breath.
Feeling despondent after endo appointment - Thyroid UK
Feeling despondent after endo appointment
Is this a recommended thyroid specialist endocrinologist off the Thyroid U.K. list ...
If it is please let Thyroid U.K. know your poor experience
Look at seeing different endocrinologist
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
Morning SD, haven’t heard from you in a while. I don’t even know the consultants name as he had a very strong Asian accent and I didn’t catch it but it wasn’t the guy that I last spoke to, it might be a good idea to ring the secretary and ask his name. He was from our local hospital, so he’s probably more into the diabetic side of endo, that seems to be the pattern here. He seemed to get a little agitated when I mentioned t3/4, converting etc, the possibility of an increase in Levo and if that didn’t go well, then maybe a reduction with an addition of T3? Nope no way, he wasn’t having any of it. He actually said that he didn’t want me to end up with a heart problem, well it’s too late for that as I already have a pacemaker. All in all I just felt so defeated as I’m not well enough informed or rather quick enough to come back with a feasible answer. It was quite obvious that he wanted to get off the phone as he said his goodbyes and put the phone down so quickly that I didn’t get a chance to even say thanks, kiss my butt or whatever. My hubby was shocked at the speed of the end of the conversation. I just got the feeling that he wouldn’t have any confrontation at all. So I will ask my Gp for some more bloods as the last lot of NHS bloods were in November. I think I may have located an endo in Cardiff, so I will persuethat line.
Yes leading thyroid specialist in Cardiff on the list from Thyroid U.K.
There are others on the list too
Many are doing consultations on zoom (or by phone) so distance no object
Obviously your results suggest you need dose increase in levothyroxine
Suggest you get the endocrinologist name and post him these guidelines
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
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
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Aim is to bring a TSH under 2.5
UK guidance suggests aiming for a TSH of 0.5–2.5 maximum
gp-update.co.uk/SM4/Mutable...
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
This was my most recent test from April, done at 10 am, no Levo or meds prior to test.I asked him about my conversion and he said it was spot on, I mentioned folate etc and he said they were fine snd I needn’t worry myself with those, he also said that my iron was good and that I should be careful not to overdose but he wasnt interested in these findings so he was going by my November tests, my ferritin then was 13 (10-291), folate was 6 (3-19). Do you think he’s just miffed that I am taking an interest or just plain dim?
Rare to find any endocrinologist who understands the interconnection between thyroid hormones and vitamins
What vitamin supplements are you currently taking?
Low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance
Difference between folate and folic acid
chriskresser.com/folate-vs-...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
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...
At the moment I take iron, vit c and vit d+k2, all mouth spray, also take collagen. Now that I’ve had these bloods done I was going to start taking B complex.
Low ferritin obviously a big problem
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
healthunlocked.com/thyroidu...
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Never supplement iron without doing full iron panel test for anaemia first
Post discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
Why low ferritin needs improving
healthunlocked.com/thyroidu...
Helpful post about iron supplements and testing
healthunlocked.com/thyroidu...
Just checked online to see the endocrinologists at the local hospital and it appears they all seem to sway towards diabetes, which doesn’t surprise me, the way that I’m putting on weight that will be my next problem. I do snack on pumpkin seeds but maybe not enough, livers not a problem and dark chocolate I could hack. Thanks again for your info
Iron mouth spray ....generally doesn’t seem to work well
Suggest you read many posts and replies re iron and ferritin by humanbean
Thyroid specialist endocrinologists are rare
Get list from Thyroid U.K.
I will do but my iron has increased slightly since I’ve been using the mouth spray and it doesn’t cause constipation as most iron supplements do.
If you add in liver or liver pâté, more red meat and vitamin c ...all should help
I’ve just put on a kilo reading that 😂
I'm so sorry. You get your hopes up thinking 'finally, I'll get to talk to an expert who will help me' then you get shot down in flames. It's horrible. I know the feeling well. Last pointless conversation was with my GP on wednesday. I was armed with 3 years of tests and evidence showing clearly that no matter how low my TSH dropped, and how high my T4 levels rose, Levels of T3 barely budged only rising by .03 Even when my TSH was in double figures, it remained the same. So I clearly demonstrated that no matter how much Ievo I took or didn't take, it didn't make a difference, I'm not converting well and his response - even with evidence - was to dismiss it all.
So you see it comes down to either having someone who will listen or someone who won't and nothing you do will convince those who are determined to dismiss you (while proclaiming themselves experts) will matter.
It is so very disappointing, not sure what else to suggest except you should make a formal complaint.
The specialist I saw said TSH at 0.05 was perfectly OK!
The last one I spoke to (telephone consultation last October) told me that my TSH of 11 was fine (I take T3 only) as it was lower than that the blood test I had before so it would come down again! And he is a Professor!
Clemmie
Yes I would be happy with that but mine has never been that low
Happy with a TSH of 11? When taking T3 it should be suppressed. I was nauseated all the time. I saw a private Endo who was disgusted that he had left me with a TSH of 11. She prescribed an increase of T3 and within a couple of days I started to feel better.
Oh Kimkat, how frustrating. Why are the doctors still hiding behind Covid? They are quite happy for one to see the nurses. It is so easy for them to intimidate you and fob you off on the phone as you have no space to put your side across. Grrr 😖
Yes I agree but I find the same when I’m in front of them if I’m honest. Just thought (stupidly) that now I’m a little more knowledgeable, I may have got further but it was quite obvious that once I started talking T4/T3 and my conversion, he couldn’t wait to get off the phone. The vitamin convo came up and I was told not to get too involved. So there you go, that’s me dismissed, very sad that seemingly we’re not expected to take an interest in our health.
I was referred to an endo over 20 years ago, at the start of my thyroid journey. I wasn't doing well on T4 alone and I had learned a bit about NDT and T4/T3 combo.I was also putting on weight in scary amounts whilst eating 1000 calories a day and exercising.
Well, he shot me down in flames saying that NDT was "pure quackery" and offered to refer me to the dietician to discuss "controlling my appetite."
I so wanted to slap him!!!
Needless to say, I haven't been near any endo since and sourced my own NDT, losing 3 stone with no trouble in the following 5 months.
I hope you get the blood tests you are asking for and the increase in meds.
Nothing has changed much then has it, which is depressing. The fact that he told me to contact a dietitian without even asking what my eating habits were, told me instantly that he wasn’t really interested. I do feel that if you don’t fit into the ideal category they just can’t be bothered.
grumpy old, can I ask if you have a thyroid or whether you have had any surgery? I have had two partial thyroidectomies and RAI three years ago, I was left for 2 years before I put on Levo, they waited until my TSH was almost 15 before they treated me, even though I constantly complained of feeling ill.
Private blood testing informed me that I have raised thyroglobulin antibodies, so I have autoimmune thyroiditis. No idea if it's Hashi's or Ord's as I have never been offered a scan so I don't know how much thyroid has been destroyed / how much remains. (No visible goitre....nor can I feel any enlargement.)I have never had surgery.
Being left to suffer for years is about par for the course. I hope you can get the meds increase you need.
x
Fuming with Endo
doctors advice, please help, I am so confused just now and not feeling at all well. 
Arrogant Endo
