Over the past 20 odd years, I have had various doses of levothyroxine, settling around 200mcg/daily for a few years. Over the last year I have had serious issues with my levels. T4 is normal but TSH is very high resulting in an increase of levothyroxine prescribed. I am currently taking 250mcg/daily. Have not seen a specialist as there is a 2 year waiting list but he has, in fact, called me to discuss and my GP is in correspondence with him for advice following blood results. I am due another blood test next week as it has been 8 weeks since the last increase. Has anyone else experienced this? I dose off around 3-4 times during the day, have little energy/stamina and basically feeling the same as I did before diagnosis. I know that the thyroxine can be increased to as much as 300mcg/daily. I would really appreciate if anyone who has experienced or has knowledge of this high dose and the effect on the body could get in touch.
Normal T4 but very high TSH: Over the past 20 odd... - Thyroid UK
Normal T4 but very high TSH
Welcome to the forum
Just testing TSH and Ft4 is completely inadequate
Do know if cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s, usually diagnosed by high thyroid antibodies
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
patients-association.org.uk...
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
plus both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here 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...
Only do private testing early Monday or Tuesday morning.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
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...
Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you currently taking
Approx how much do you weigh in kilo
Before considering booking any consultation
Always get full thyroid and vitamin testing done
Come back with new post once you have results
If dose levothyroxine is substantially higher than 1.6mcg levothyroxine per kilo of your weight per day ….this suggests poor gut absorption
academic.oup.com/edrv/artic...
The most frequent conditions that must be taken into account are Helicobacter pylori infection, lactose maldigestion, and celiac disease
Have you been tested for coeliac, H Pylori and lactose intolerance
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Hashimoto’s and leaky gut often occur together
Both dairy and gluten are inflammatory foods
Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3 if clinically appropriate
tukadmin@thyroiduk.org
Hello Chamade and welcome to the forum :
T4 is a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body and said to be around 4 times more powerful than T4.
I do wonder if you are not able to absorb the T4 well and maybe there is a problem within your body and you are struggling to convert the T4 into T3 as your symptoms very much sound like symptoms of hypothyroidism and too low a T3 for your body to be fully functioning.
Your own ability to convert T4 well can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D , and antibodies, inflammation and any physiological stress ( emotional or physical ) depression, dieting and ageing can also impact conversion.
In order for T4 to work well it does need to be taken with a glass of water on an empty stomach and wait around an hour to eat or drink anything.
Some people can't tolerate T4 and need to take T3 - Liothyronine :
In the first instance we need to see how well you can convert the T4 into T3 - and if you doctor is not able to help you if you go into Thyroid UK - the charity who support this forum - thyroiduk.org there is a list of private companies who can undertake all the blood tests and some offer a nurse home visit to draw the blood for you.
Always arrange an early morning appointment for a thyroid blood test and fast over night just taking in water and take your daily dose of T4 after the blood draw.
When you have the results simply start a new post with the readings and ranges and you will be talked through what it all means and your next best step forward to better health, well being, and staying awake in the daytime.
At one point I was on 550mcg levothyroxine and still had ‘poor’ test results. Felt I sourced some ndt which was what I was originally prescribed when diagnosed six decades ago. I was soon dropping off the levo dose. I now take 125 mcg levo ( sometimes reduced to 100mcg due to pharmacy issuing Teva despite prescription stating NO TEVA Levothyroxine! ) along with 1.5 grains of ndt. This has been not too bad recently although I have to keep an eye on vitamins and supplement as required. My GP raised the levo to 550 without any endo input. She was a great believer in the need to check symptoms and general well being.
Hi Miffie,
I am just curious if they gave any information to you to why they thought the high dose was not helping you with symptoms. Did they have any insight?
No one had any idea why I wasn’t improving on increased doses. Lots of vague comments about how long I’d been hypothyroid ( no other patient came close it seemed) at that point it was at least 50 years since diagnosis. Other thoughts were around ability to absorb, unknown contra indications with other meds. Definitely no insight! It was obvious from private testing and personal history I benefited from a bit of T3.
How frustrating for you, I am so sorry you had to go through that - but happy for the breakthrough. And that you have someone that is listening to symptoms.
That particular GP is no longer around but I continue to smile at them, point out an endo is ok with my adding ndt to levo and then twitter pleasantly about how we know how hard things are for NHS these days, our shared experiences of the lab refusing to test properly and flit out on a note of Ill let you know if I feel over replaced or have an alarming private blood test result. Final comment always something breezy about any hyper type symptoms/results will be a first after sixty years of hypothyroidism. I think it serves to remind GPs I’ve lived with the condition longer than they have been alive. Being in our seventies brings certain advantages.
Hi Chamade,
My levels were still off at 200 mcg. They put me up to 225 mcg and in time the labs got better. But I never did.
I could hardly function through a day. It was beyond fatigue, I had almost narcolepsy- like moments daily. Many of them. I would even be in a text conversation with someone - an interesting one at that - and drop the phone because I just instantly went to sleep in the middle of talking.
I would fall asleep sitting up like someone had given me a needle. Before this I had never fallen asleep sitting up in my life. I had other issues such as not feeling *here*, tremendous hair loss, constipation, cognitive issues - rarely being able to write a sentence without missing a word.
They would not let me off Synthroid, despite all these daily issues. Insert big, fat sigh.
But there was no way monotherapy was going to work for me. The higher I got, the worse everything was for me.
So I sourced NDT. Almost immediately things changed (note the first week or so felt like it was not for me - like my body was searching for more). I was no longer falling asleep, hair stopped falling out, used the washroom regularly, and my cognitive abilities instantly changed.
Unfortunately, despite feeling this good my labs were atrocious & my second batch is stuck in customs here. That in itself has brought stress a la what if it never gets to me? Some nights I was not sleeping over that issue, as I do not have a thyroid so it is crucial I have medication and the thought of going back on Synthroid alone was like a horror show. Coincidentally, I started with a new endocrinologist at the same exact time & he was open to giving me a Cytomel prescription or NDT. Both are way beyond my financial abilities to purchase here (Canada) but I chose Cytomel plus levothyroxine (112 mcg levothyroxine, 25 mcg Cytomel) with the promise by him he would offer the NDT prescription again if I was not happy with this choice. I was in complete shock that he was even open, just thrilled I had finally found someone who cares about symptoms.
I hope you find a solution soon. I know how frustrating it can be.
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