Hi all, my GP is of the opinion that I do not need thyroid hormone replacement despite an official diagnosis in 2011 of TSH 30.7 (0.2 -4.2) and FT4 10.3 (12 - 22) as I physically do not look like I need it. I take 75mcg Levothyroxine and my symptoms are mainly swollen feeling neck, dry skin, hard stool, pins and needles, depression and tiredness. She wants me to go down the mental health route. I have had my Levothyroxine dose changed a lot, too.
Advice welcome and do I need to post recent bloods? Thanks
MAY-2018
TSH 4.70 (0.2 - 4.2)
FREE T4 14.7 (12 - 22)
FREE T3 3.6 (3.1 - 6.8)
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Hi all, my GP is of the opinion that I do not need thyroid hormone replacement despite an official diagnosis in 2011 of TSH 30.7 (0.2 -4.2) and FT4 10.3 (12 - 22) as I physically do not look like I need it.
And what do we need to look like to need thyroid hormone replacement in her opinion?
Can I ask how you look when you attend your GP appointments? Do you put make up on so that you're looking at your best?
To get a full picture of your thyroid status we need results, including reference ranges, for
TSH
FT4
FT3
Thyroid antibodies
and because we need optimal levels of vitamins and minerals for thyroid hormone to work properly we also need:
Thank you! No I do not put on any make up when attending appointments. I am just having a hard time putting on weight. This has been the case since I was 10 years old. I am currently 33.
MAY-2018
TSH 4.70 (0.2 - 4.2)
FREE T4 14.7 (12 - 22)
FREE T3 3.6 (3.1 - 6.8)
Antibody testing was done some time ago but here are the results. They were done by Blue Horizon.
Ah, so we have a GP who thinks you need to be fat to have hypothyroidism! Well, that's not true, you can be hypo and slim.
Antibody testing was done some time ago but here are the results. They were done by Blue Horizon.
JUNE-2015
THYROGLOBULIN ANTIBODY 276.3 (0 - 115)
THYROID PEROXIDASE ANTIBODY 58.3 (0 - 34)
OK, when antibodies are positive, we don't need to retest.
Your raised antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. This will be the reason why you have had many dose changes - as and when your test results fluctuated. You can also have symptoms of both hypo and hyper.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies, so it's important to get those vitamins and mineals tested.
MAY-2018
TSH 4.70 (0.2 - 4.2)
FREE T4 14.7 (12 - 22)
FREE T3 3.6 (3.1 - 6.8)
These results show that you were undermedicated at that time, wih an over range TSH, and very low in range FT4 and FT3. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well. Were you on 75mcg at the time of that test? If so you should have had an increase in dose.
Waiting on new bloods for thyroid.
Is the test booked or have you had it already? If you're waiting for your test, we always advise the following:
When booking thyroid tests, always book the very first appointment of the morning and fast overnight (have evening meal the night before, delay breakfast on the morning of the test, but water is allowed) . This gives the highest possible TSH which is needed when looking for a diagnosis, an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It can also lower after eating and coffee also affects TSH. Also, take your Levo after the blood draw because if you take it before then your FT4 will reflect this and show higher than what is normally circulating. We usually advise 24 hours between last dose of Levo and blood draw so if you take your Levo in the morning then delay until after the test, or if you take it at night then delay that dose until after the test. These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Post your new results when you have them for further comment.
PS - She wants me to go down the mental health route
No need for that, nothing wrong with your mental health at all so refuse anything to do with that, you don't want that on your medical record. You just need your thyroid condition to be taken seriously and medicated properly.
Thanks. Yes that's right. She said she thought I had hyperthyroidism and my levels indicate I have sufficient thyroid function.
My new thyroid bloods were done today at 2pm and non fasting and I did leave off Levothyroxine for 24 hours but my endocrinology consultant was aware of this. They are usually done fasting, early in the morning and leaving off Levothyroxine for 24 hours.
Why do you need to gain weight? Most people these days are too fat, so we get used to seeing as "normal" what would have been considered overweight 40 years ago. Best way to gain weight is resistance training (but not while your T3 is low) and a medium carb, medium protein, medium fat diet (saturated fat and some natural oils [like flax and olive] are best). Also need optimal levels of vitamins
TOTAL 25 OH VITAMIN D 55.6 (<25 severe vitamin D deficiency. Patient may need pharmacological preparations. 25 - 50 vitamin D deficiency. Supplementation is indicated. 50 - 75 vitamin D may be suboptimal, and long-term may lead to clinical effects. Advise on safe sun exposure and diet. Supplementation may be indicated. >75 adequate vitamin D)
FOLATE 3.1 (2.5 - 19.5)
FERRITIN 68 (15 - 150)
I have confirmed iron deficiency found in 2012, confirmed vitamin D deficiency found in 2013, confirmed folate deficiency found in 2017 as well. I take 5mg folic acid, 3000IU vitamin D as the 800IU did very little to raise my level and IV iron was done at the start of the year.
This is low enough to possibly warrant further investigation. Do you have any signs of B12 deficiency - check here b12deficiency.info/signs-an...
Be aware that taking folic acid masks signs of B12 deficiency/pernicious anaemia, so list any that you have had or may have now. If you have any ask for further testing but leave off folic acid, if found to need B12 injections then folic acid is started afterwards.
I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
And an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
**
I have confirmed iron deficiency found in 2012, IV iron was done at the start of the year.
Are you being monitored? What is going to be done about keeping your ferritin at a good level? It needs to be maintained once raised, either with a maintenance dose of iron tablets or by eating liver regularly, or liver pate or black pudding.
**
TOTAL 25 OH VITAMIN D 55.6 3000IU vitamin D as the 800IU did very little to raise my level
What form of D3 are you taking? As you have Hashi's then an oral spray is best for absorption, eg BetterYou.
The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L.
Personally, I would raise your dose for now and take 5000-6000iu daily for 3 months then retest. When you've reached the level recommended by the Vit D Council - which is 100-150nmol/L - then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3 as recommended by the Vit D Council -
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
Yes I think it would be worth the GP going down the mental health route as she is obviously not thinking clearly. Perhaps she feels more confident on mental health, bless. She’s dangerous!
That will free you up to get a new GP, hopefully one that knows what they’re doing! Good luck x
You are most likely right. Test results will be very unreliable if there have been lots of changes in dose, besides if you adjust according to how you feel, you will end up in the right part of the range when tested.
Yes my endocrinology consultant today did my levels for thyroid as a new patient coming to his clinic. He is aware they might be skewed as they were done non fasting and in the afternoon but I did leave off Levothyroxine for 24 hours as a precaution.
And just to add, I’m very slim, always have been, can’t put on weight, and my Hashis/Hypo was ignored because of how I look. I eventually sought help outside the NHS (Dr P) and got my life back.
OMG - your doctor is determined to make you very ill. What a total idiot. I had a TSH of 60 and a T4 way below the normal range, but my GP insisted on testing again and waiting for the results despite the fact I was really unwell because I wasn’t overweight. They are sadists! Please don’t put up with it! (I sense from your messages that you won’t!) I didn’t really know much about hypothyroidism at the time so I didn’t object. If I’d known then what I know now...
Your vitamins are all dire because you are under medicated
Also insist on coeliac blood test before going strictly gluten free
Most hypothyroid patients gain weight, but a significant number struggle to maintain or gain weight due to malabsorption in gut, low vitamins and very very often gluten intolerance, if not coeliac
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood
Dose of Levothyroxine needs increasing in 25mcg steps. Retesting 6-8 weeks after each increase. This continues until TSH is around one and FT4 towards top of range and FT3 at least half way in range
Vitamins all need to be optimal
Folate and B12 are far too low. A daily good quality vitamin B complex, one with folate in not folic acid may be beneficial. Eg Igennus Super B or Jarrow B-right.
If you have low B12 symptoms you may need sublingual B12 as well certainly for few months.
Your GP is a horror! I had an endo say exactly the same to me - apparently I didn't look like I had a thyroid problem so all my symptoms and high TSH/low T4/3 and positive thyroid antibodies were all totally irrelevant and the symptoms must be due to something else. Get a new GP ASAP!
The British Thyroid Org just put a post on Facebook highlighting the mental health symptoms of thyroid problems, btf-thyroid.org/information... Good luck with your new GP, hope you can find someone more supportive x
A true story. Way back in the past around 1969 my wife was working for Prof Reg Hall in Newcastle-upon-Tyne Royal Victoria Infirmary. Hall was a pioneer in developing the first TSH test for thyroid function diagnosis. T4 and T3 tests hadn't yet been properly developed. My wife was his technician doing the TSH test. She became hypothyroid with Hashimoto's but remained slim and working, though easily tired. When her results of TSH 20+ came up on the test the Prof said. "if you are hypothyroid I'll eat my hat!" Do the test again because it is likely to be mistaken. On repeat, the test TSH was 30. The Prof at that time had written about hypothyroid women that they were likely to be "fat and forty". Therefore slim ad 29 didn't fit the bill. Not only did he rewrite his book, but the staff made a cake in the shape of a hat and made him eat it.
Sorry but I hooted with laughter, I never fail to be amazed at some drs. Deff change him. My thyroid was removed 2009 no one told me i would need to take thyroid replacement and i became obviously very unwell, slipping in and out of coma like state. My Dr discounted it being thyroid related as 1. it had been removed and therefore my thyroid problems had been resolved and 2. I had a long history of IBS, diarrhoea and mostly felt too hot, he said if hypo i would have constipation and feel cold all the time.
I saw Dr P after a few years for a 2nd opinion and he was shocked, of course i now know my dr knew less than nothing, he wasnt malicious just stupid.
I went back to see him 3 months after i started ndt he couldnt believe the change in me, i looked so different physically and he said 'dont tell me it really was your thyroid after all this time' well i could have punched him tbh! I had repeatedly told him i hadnt felt well since the operation. He said he truly believed i was just 'fat, menopausal, depressed, feeble, losing my looks, my figure, exaggerating the pain, fatigue and falsifying my food diary'
I went from a life long competitive sports woman, fit, strong, slim, active to a shambling, shaking, bed ridden, fat (6 stone weight gain in 2 years) unable to think, read, construct a sentence and at the end suicidal, all because my dr was inept. He was happy to give me every pill in his book, just not the one i needed. I lost a few years of my life but i could have died, change dr xxxx
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Apparently my thyroid levels are sufficient enough but I don't think they are. Thanks x
All test results...could really use some help please for a newbie
Newbie
Hi
T3 taken away, looking for a new source please :)
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