hi, can someone advise me on my wife’s numbers. Doctor has her on 25mg .
Diagnosed 6 months ago. This is her second bloods last week. Doctor say no need for change of dose. She’s struggling with her weight, always been slim, constipation and a debilitating sore back.
thanks
25mg levothyroxine
Change your doctor! This one is an idiot. Her TSH is much too high and her dose is much to low.
25 mcg is a starter dose for children, the elderly or those with a heart condition. If she doesn't qualify for any of those catagories, she should have been started on 50 mcg. And, that should have been increased to 75 six weeks later!
Your doctor is dosing by the TSH - and he's even getting that wrong! TSH should come down to 1 or under. But, just testing TSH is totally inadequate. It's not even a thyroid hormone. He should at least be testing the FT4. But, the most important number is the FT3, and I'm guessing that is pretty low. Which is why she still has hypo symptoms, like weight-gain.
Time to put your foot down and politely insist that he increase her dose by 25 mcg, and retest in about six weeks.
Meantime, it would be a good idea, if you can, to get private testing. You need:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
Details of private testing companies here:
thyroiduk.org/help-and-supp...
Thank you
You wont be surprised that most of us have had to find our own way to be diagnosed - as not one doctor could diagnose me and I was very hypothyroid but undiagnosed.
I had a TSH of 100 and GP phoned to tell me I 'had no problems'.
There's something seriously wrong with their training.
Thankfully I found Thyroiduk and from then on improved with the help of members.
Hi Bigfraz ...... get GP to read this list of references . TSH of 3 is higher than is recommended for optimal thyroid treatment , therefore GP should be wiling to increase dose if symptoms of hypothyroidism are still a problem.
all of these references advise keeping TSH between about 0.4 /0.5 and 2 /2.5 for patients on levothyroxine , some were written specifically for GP's : healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Explanation of why getting TSH 'anywhere in range' is not the same as 'optimal' : healthunlocked.com/thyroidu... -the-shoe-size-analogy.
Hope this helps
Thanks
See different GP and INSIST on 25mcg dose increase in levothyroxine to 50mcg
Retest again in 6-8 weeks
Likely to need several further increases over coming months
Meanwhile request insist they test thyroid antibodies, vitamin D, folate, ferritin and B12
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
Also 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
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 that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
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.
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
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
guidelines on dose levothyroxine by weight
Even if we frequently start on only 50mcg, 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.
Thanks
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
TSH should be under 2 as an absolute maximum when on levothyroxine
Absolutely shocking that your wife has only had two blood tests since being diagnosed.This should have been done every few weeks when first starting Levothyroxine and the dosage increased accordingly.When I was under medicated I found joint pain,weight gain and constipation three of the main symptoms.Push for the increase and don’t take no for an answer.Don’t be fobbed off with pain relief or antidepressants.The longer your Wife goes under dosed the more and more symptoms will appear.
Thsnks
So sorry to hear what has happened. Definately change who your wife sees. If you get no joy again complain to the Practise Manager quoting the guidelines given. Appalling.It a good idea idea to gen yourself up on Hypothyroidism as many doctors are really ignorant and often do not know even the guidelines. Then you will find it easier to fighter her corner and recognise when she is bring fobbed off. There are some great books on Thyroid UK Website recommended.
Thanks
"Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.Some people, such as over-50s or people with heart disease, may start on a lower dose." From nhs.uk/medicines/levothyrox...
I am on 100/125 on alternate days, am 72 and have had a hole in my heart mended last year! See another GP!
I agree with what grey goose has said totally, also ask for a bone profile test to be done too then you will find out if she has osteoporosis too. May need a DEXA scan to confirm osteoporosis. Ask for a referral to endocrinologist or go to one privately. A good endocrinologist will not use TSH to decided what dose she needs to be on , they will only use fT4 and fT3. Her medications should have been increased every 6 to 8 weeks to start with , so leaving her on 25mcg for 6months is wrong. It wouldn't have done anything except reduce the TSH a little bit. Her TSH needs to be much lower, but it's her symptoms that they should be going by not TSH when on medication. Obviously another clueless/ignorant GP.
Weight gain is normal with hypothyroidism. Unfortunately, there is no diet that I can recommend. I've tried them all and all I do is feel hungry, tired and still put on weight. She could try an intermittent fasting diet. Best diet all round is eat 3 small meals a day and add in cod liver oil and vitamin d3 capsules with K2. May need to add magnesium too and zinc. Most hypothyroid people are very deficient in these vitamins and minerals. :/ But don't take them altogether, space them apart as they don't interact well altogether. Don't rest too much, keep walking or swimming. Best way to get energy, do some low weights strengthening exercises. Not cardio. Hypothyroid people lose a lot of muscle. :/ I wish you all the best.
Thanks
I just like to point out that this is the beginning of the rest of your [her] life so it's worthwhile to take th time it takes to get it right. You've gotten tons of excellent information - it may seem overwhelming but no one expects you to become an expert overnight. Just read the references, then read again, ask questions no matter how silly they may feel (there are no dumb questions). Let your wife know she has a whole village supporting her.
Patti in AZ
Totally agree Patti, this forum is so unbelievably supportive when the medical professionals seem to have failed us or given half the answer.
Thanks
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