Today I had a face to face appointment with my endocrine Dr. It’s the second time I’ve felt with him now and it’s not gone well. I had bloods taken pre appointment so I could know what was what, they did not get forwarded to my GP so couldn’t look them up on line.
My TSH is 2.1 (no range) , up from 0.8 this is on 75mcg of levo. No idea the T4 and T3 as he wouldn’t say just they are in range! He seemed unconcerned that my TSH has gone from 0.8 to 2.1 in 4 months. Why would it do that if it was stable?
He also called levothyroxine a vitamin?! What?! Is this right? I though it was a hormone replacement!!!
I am going to get my GP to get the blood results and get a print out of the last years and find a new consultant I think.
Sorry this is a huge rant more than anything else. Why is it so hard to get treated properly.
I am trying for a baby too. I’ve had 3 miscarriages in 12 months which he claims in unrelated to my thyroid. I have had a healthy pregnancy pre thyroid issues.
Any suggestions on what I should be doing?
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Robski501
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Recommend getting FULL thyroid and vitamin testing done privately BEFORE considering booking any consultation with a recommended thyroid specialist endocrinologist
Vast majority of endocrinologists are diabetes specialists and useless for thyroid
On levothyroxine TSH should be around or under 1
75mcg levothyroxine is only one step up from starter dose
How much do you weigh approx in kilo
What vitamin supplements are you currently taking
When were vitamin D, folate, ferritin and B12 last tested
Have you had thyroid antibodies tested for autoimmune thyroid disease aka Hashimoto’s
About 90% of primary hypothyroidism is autoimmune thyroid disease
I had my blood test early morning before food and on only water. It was for TSH, T4 & T3. He wouldn’t disclose the level of T4 or T3 just they are in range. His first comment was you levels are in range so any symptoms you have are not thyroid related.
I weight around 74kg
Vitamins I take are Thorne B complex, magnesium, folic acid 5mg, Tumeric, omega 3.
I was tested for antibodies by my GP when being diagnosed and I do have them.
I’ve not been tested for coeliac disease but I don’t have any issues with gluten and I’m not on a gluten free diet.
I had my vitamins tested and received results last week. All by thriva
B12 - >150 (37.5-150)
Ferritin 40 (15-400)
Vitamin D 100 (50-250)
Folate wasn’t tested but was above range last year I think maybe because I take folic acid?
Should I get my thyroid re-tested before a private appointment ?
I do have autoimmune thyroid disease. I’ve had antibodies tested right at the start which was positive for antibodies. I’m probably not eating enough iron rich foods. I will get on with doing that. I have left a message with secretary today, she’s not back until Monday so will chase next week if she does not respond.
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.
He also called levothyroxine a vitamin?! What?! Is this right? I though it was a hormone replacement!!!
You're right, your doctor is wrong. I find it hard to believe that a doctor would be that ignorant so I suspect it was intended to be demeaning to you in some way, and is intended to be a put-down of some kind.
People with hypothyroidism tend to need a TSH which is lower than the average for healthy people, but doctors don't seem to know that or care about it.
I’ve had 3 miscarriages in 12 months which he claims in unrelated to my thyroid
He's definitely an idiot. He may be a diabetes specialist who barely knows anything about the thyroid. A lot of endos are like that.
Some links you might find helpful in respect to pregnancy.
Thank you Humanbean, I will have a good look at those sites.
I totally agree he was very demeaning! I’m a nurse and I don’t know if that is why he was being like that. He doesn’t appreciate people being well informed either. Very controlling. I definitely won’t be seeing him again. His secretary once referred to levo as being a glorified vitamin too! I thought she was just being thick but when he said it I was shocked!!
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.
Gluten intolerance is often a hidden issue too. Request coeliac blood test BEFORE considering trial on strictly gluten free diet
My brands swap all the time! I had a medication review last month and requested I stick with the same brand and not Teva because things definitely feel different when I take that. I’m picking up meds today so we shall see if that message got across!
Work out which brand levothyroxine suits you best and ALWAYS get same brand at each prescription
Have note added to all future prescriptions NO TEVA
Many people find Levothyroxine brands are not interchangeable.
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
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
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
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
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
"Have note added to all future prescriptions NO TEVA
"Many people find Levothyroxine brands are not interchangeable."
SlowDragon, I did all that, it was included in the prescription info, 'Only prescribe Mercury Pharm'. I was talking to myself! When I questioned the pharmacist, he told me, I have no control over what's delivered. My GP can't even get the prescription right!
I did make sure that it read only Mercury Pharma, fat lot of good it me! I usea small pharmacy, that's very accommodating. Thanks, next time I'll try your advice and take it to another chemist if it ain't Mercury.
This happened to me today! Had a very heated discussion with the pharmacist who said we have no control over what is received. Was told GP has to specify which I believe they did. I asked why they couldn’t put aside levo brands for people who can’t interchange brands. They said not enough storage for this!
I sympathise with the pharmacist. Last week I had (an incomplete) delivery of Levo, Teva (of course!) so I returned to the pharmacy with the Teva and by pure luck , he'd had a delivery of Mercury that day! So all the talk here of what's right, what they should do and whether the name is on the first line, is entirely irrelevant! We live in the real world, where results are the only thing that counts. If you have a GP surgery like mine, it's purely down to potluck.
Important to remember to stop taking vitamin B complex a week before all blood tests as it contains biotin
Biotin can falsely affect test results (it’s used in many lab tests)
Vast majority of endocrinologists are diabetes specialists and useless for thyroid
Roughly where in U.K. are you
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors
tukadmin@thyroiduk.org
Before considering booking any consultation you need to know thyroid antibodies and if antibodies are high, have coeliac blood test BEFORE considering trial on strictly gluten free diet
Come back with new post once you get TSH, Ft4 and Ft3 results
I think Endos get money under false pretences, if you can get one that is! I actually got an appointment with one at a well known, London teaching hospital who presaged the visit (I cancelled) with a letter which opened with, "If you're coming to see me about getting prescribed T3, you're out of luck', or words to that effect.
Quoting facts at me is useless, I live in the real world, I'm a real human, I'm not a statistic. My GP went as far as to email me, "I can't help you anymore." End of story.
Mlinde please can I ask which CCG you're in, and which hospital told you "If you're coming to see me about getting prescribed T3, you're out of luck". And when did this happen? I help to report these anonymously to NHSE
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