Adam this is appalling! 25 mcg is a very small dosage - a so-called starter dose (most people start at 50 mcg). The protocol is to be at this dosage only 6-8 weeks followed by repeated blood tests and dosage increases until levels are optimal.
So - to be clear - she was kept at 25 mcg for 5 years because some GP was "investigating addisons". I think you need to find another GP immediately and go over this history of negligent care.
The endo she was first under checked her for addisons and her cortisol came back low. She was told the endo would do more investigations but instead she discharged her. She is looking for an endo who would look into her case more thoroughly.
Ask your doctor whether her low cortisol readings could actually be a result of critically low vitamin levels. Did they ever check vitamin levels before and if so what was the outcome?
OK, here goes then. She must be feeling absolutely dreadful.
TSH 34 (0.2 - 4.2)
Free T4 10.1 (12 - 22)
Free T3 3.2 (3.1 - 6.8)
She is dreadfully undermedicated. 25mcg is a starter dose for children, the elderly, frail and people with heart conditions.
She should have been retested 6 weeks after starting Levo and had regular increases of 25mcg and retests every 6 weeks until her symptoms abated and she felt well.
The aim of a hypo patient generally is for TSH to be 1 or below or wherever it needs to be for F4 and FT3 to be in the upper part of their reference ranges if that is where the patient feels well.
So first off, she desperately needs an immediate increase, then retesting 6 weeks later, and follow the retest/increase protocol until she feels well.
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TPO antibody 906.5 (<34)
TG antibody >1500 (<115)
These high antibodies confirm Hashimoto's which is where antibodies attack the thyroid and gradually destroy it.
The antibody attacks cause fluctuations in symptoms and test results. When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range.These 'Hashi's flares' cause hypo to hyper swings and back again. They are temporary and things will eventually go back to normal. At the moment, your wife is in a very hypo phase of Hashimoto's.
She 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.
Links explaining Hashi's given in above post.
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Ferritin 12 (15 - 150)
MCV 76.3 (80 - 98)
MCHC 375 (310 - 350)
This all suggests iron deficiency anaemia. Please see your GP and point this out and ask for appropriate treatment.
NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):
•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).
•Treat with oral ferrous sulphate 200 mg tablets two or three times a day. ◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.
◦Do not wait for investigations to be carried out before prescribing iron supplements.
•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.
• Monitor the person to ensure that there is an adequate response to iron treatment.
For thyroid hormone to work ferritin needs to be at least 70, preferable half way through range.
Ideally she needs an iron infusion so ask for one, but she may only be prescribed tablets which will take months to raise her level whereas an infusion will raise her level within 24-48 hours.
Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.
Also, eating liver regularly, maximum 200g per week due to it's high Vit A content, and eating lots of rich food will help apjcn.nhri.org.tw/server/in...
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Folate 2.5 (4.6 - 18.7)
Vitamin B12 194 (180 - 900)
She is folate deficient with very low B12. Does she have any signs of B12 deficiency b12deficiency.info/signs-an... If so please post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc
If not she must raise her B12 level and she needs folic acid.
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."
That's good enough for me and I keep mine around 1000. Sublingual methylcobalamin lozenges are what's needed to supplement B12 yourself along with a good B Complex to balance all the B vitamins.
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Vitamin D total 13.7 (<25 severe)
She has very severe deficiency. Please discuss with your GP and point out the following then ask for the loading doses:
Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.
For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."
Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and demand that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed she will need a reduced amount to bring her level up to what's recommended by the Vit D Council and then she'll need a sensible maintenance dose which may be 2000iu daily, 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/
The recommended level, according to the Vit D Councill is 100-150nmol/L.
There are important cofactors needed when taking D3
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.
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 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
If it was me,I would change to another GP practice,if possible,going on local word of mouth recommendations by intelligent folk to find the best group & the best GPs in that practice.
Hello and welcome. Are these results recent? Has your wife returned to her doctor with these results and asked for treatment? If not, she needs to do so immediately. Not only is she hypothyroid but her vitamin D is disastrously low as is ferritin and folate. Is she taking Levothyroxine? If not she needs to start immediately. The high antibodies show that she has Hashimotos thyroiditis. There is no cure for this but the symptoms of hypothyroidism are treatable with levothyroxine. Low vitamin levels often accompany Hashimotos and they need to be treated.
The best advice on how to treat these kinds of vitamin deficiencies can be read on posts by SeasideSusie and go to your GP armed with the information and make sure they provide the correct treatment for vitamin D.
Although her B12 is within NHS range, the doctor would be wise to rule out pernicious anaemia as you can have vitamin B12 deficiency anywhere in range according to the information on the Pernicious Anaemia UK website. We need B12 to be high in range in order to feel well and utilise levothyroxine effectively. The same goes for all the other vitaminss which need to be half way in range.
Please do not delay, make a docs appointment right away.
I'm appalled at the lack of care your wife has recieved. I'm sorry for both of you. She should have had her thyroid levels checked every 6 weeks and the dose adjusted as SeasideSusie has already said.
Your doctor should have picked this up before now as hypothryoid patients should have blood tests every 6 months to a year if stable and more often if fluctuating. Blood tests can fluctuate with Hashimotos thyroiditis.
Now, she should have blood tests every 6 weeks and the dose should be adjusted until she feels well or reaches TSH 1.0 or near to it. Most people feel well at that level but most doctors do not know
Always have blood tests earliest in the morning as possible and do not take levothyroxine until after the test. Always take levothyroxine on an empty stomach with a full glass of water and wait 1 hour until eating or drinking anything except for water for maximum absorption. Wait at least 4 hours before taking any other medication or supplements, especially iron.
I've got an overactive thyroid. I became hypo during my treatment - nothing near close to your wife's results but it wasn't nice. Overactive is awful but hypo is awful in a different way, just as bad though.
All I can say is, your poor wife. I can't imagine how she is even able to get up in the morning never mind get through the day with results like what she has, she must be feeling dreadful.
I do hope you got somewhere when you saw /see your doctor today / tonight.
I tend to agree. We often see shocking treatment from doctors here on this forum, but this is the worst I've seen I think. Terrible.
Adam1977 - you've been given some fabulous advice in response to your post. Please seek a competent doctor for your wife as soon as possible. She must be feeling dreadful with all this lack of treatment.
Adam I have little to add beyond the excellent advice you've had from SeasideSusie Nanaedake and Fruitandnutcase . To let you know that these are all long standing and valued members of our forum who have helped me achieve the level of wellness I have now. Your poor wife must be feeling so awful and I'm glad that she has your support.
Her doctor is a buffoon and as we are unlikely to be able to arrange for him to be horsewhipped, named and shamed she should find another, better GP as soon as possible.
In the meanwhile I suggest that you accompany her to her consultations with this tool. And PS it is not her age, she should not eat less and move around more it is not all in her head and 25mcg a day of levothyroxine will never make her feel better.
Future bloods should be drawn as early as possible after fasting ( water is OK ) for a minimum of 10 hours and before she takes her starvation ration of levo that day.
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