Hi I am new and I am 17 years old. I was diagnosed with hypothyroidism when I was 12 but today GP has sent me away with antidepressants despite abnormal test results. So what do I do now please? I take 100mcg levothyroxine. Thank you
TSH 9.3 mIU/L (0.2 - 4.2)
Free T4 12.7 pmol/L (12 - 22)
Free T3 3.1 pmol/L (3.1 - 6.8)
Angelique5 funny how your GP was able to read the Pounds sign for prescribing anti depressants (they/the surgery receive £1,650 for each new diagnosis and more for check ups) yet was unable to read the numbers on your blood test results and realise that your TSH was well over range and the others were at the bottom of the range.
Find another GP who isn't a muppet, yours sounds a dead loss.
Angelique5 If it was me, then I wouldn't take the antidepressants so if you haven't already taken one then best not to start them.
Next I would make an appointment with a different GP, say that your TSH is very high over range, your FT4 is very low in range and your FT3 has just scraped in at the bottom of the range, and this all means that you are undermedicated. Will this other GP therefore remove any mention of depression and antidepressants from your record and give you an increase in dose of Levo.
Depression is a symptom of hypothyroidism and if you do have any hint of depression then it will be down to the fact that you are very hypothyroid with those results. You really don't want a diagnosis of depression on your record, it will follow you throughout your life and everything you go to see your GP about will be blamed on your 'depression'.
As far as where your thyroid hormone levels should be, see thyroiduk.org.uk/tuk/about_... > Treatment Options:
According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.
The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.
Also -
Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing dionne.fulcher@thyroiduk.org print it and highlight question 6 to show your doctor.
So you need to lower your TSH considerably and improve your free Ts. You should have an increase of 25mcg Levo immediately, followed 6 weeks later by retestisng and another 25mcg dose increase, and this is repeated until you feel well with your levels wherever they need to be to achieve that.
When booking thyroid tests, always book the very first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. This is a patient to patient tip which we don't discuss with doctors or phlebotomists.
Once you've got your increase in Levo you might want to consider whether you wish to make a formal complaint against this idiot GP who has ignored your poor test results and diagnosed you with depression rather than addressing the fact that you are undermecated thyroid-wise.
Just to second Seaside Susie's comments and ask if you have any vitamin and mineral levels to share so that members might comment? It's not unusual for poor gut absorption to be arm in arm with hypothyroidism and I'm wondering if you have poor vitamin and mineral levels that are contributing to how you feel?
Plus, it's common that improving vitamins and minerals to optimal levels are said to make supplemented thyroid hormones more effective.
Vitamin D 14.3 (<25 severe deficiency)
Vitamin B12 102.5 (180 - 900)
Ferritin 6 (15 - 150)
Folate 1.5 (2.5 - 19.5)
Thanks
Oh, Wow. Can I commend you on even being able to get out of bed in the morning?
You know what I'm going to say - every one of those deficiencies is severe. Are you on any treatment, if so, what supplements, what dosages and for how long? Have you been investigated for the B12 deficiency? E.g., Coeliac's Disease; H Pylori; Intrinsic Factors etc.?
No treatment and I have coeliac disease and h pylori
There is no treatment for Coeliac. Are you 100% gluten-free?
No I didn't know I had to be gluten free
Well, it's weird that your doctor didn't tell you that, when he diagnosed you Coeliac. What did he say?
Thanks he just said I had coeliac. Nothing mentioned about going gluten free
Oh well, perhaps he doesn't know. But, he should know. How was your Coeliac diagnosed?
Thanks it was done with a blood test
The coeliac blood test is only stage one. You should always have follow up endoscopy to check the severity of damage to gut
How long ago was the coeliac blood test done?
A year ago
It's so unbelievably negligent I am lost for words.
I have replied below.
Can you see different GP urgently
You can read about Coeliac Disease and common auto-immune conditions that sometimes occur with it: coeliac.org.uk/coeliac-dise...
That site will also tell you about the NHS and Coeliac's Disease and how best to manage it.
Angelique5
Endo has asked for depression and general anxiety disorder to be put on my medical records
No, no, no, you can't allow that. An endo is not qualified to diagnose either of those conditions. Your problem lies with undermedication and dreadful nutrient deficiencies. And I wouldn't be at all suprised if you have autoimmune thyroiditis aka Hashimoto's which is confirmed by high antibodies. Have you had these tested?
If anything, you should make a complaint against the doctor/s who have allowed this situation to happen and ignored your dreadful results.
You absolutely must make an urgent appointment with your GP and point out all these deficiencies and get the appropriate treatment, and under no circumstances allow a diagnosis of depression and/or anxiety disorder to be put or remain on your record.
Vitamin D 14.3 (<25 severe deficiency)
You have severe Vit D deficiency and need loading doses of D3. Do not leave the surgery with a prescription for 800iu, it must be the loading doses - see NICE treatment summary for Vit D deficiency:
cks.nice.org.uk/vitamin-d-d...
"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 maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU 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 regims 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 ask that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result as the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a 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/
Don't expect your doctor to know this (because they aren't trained in nutrition) but there are important cofactors needed when taking D3
vitamindcouncil.org/about-v...
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 helps D3 to work and 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
naturalnews.com/046401_magn...
Check out the other cofactors too.
**
Ferritin 6 (15 - 150)
For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.
You need an iron supplement and as your level is so low you should ask for an iron infusion which will raise your level within 24-48 hours, tablets will take many months. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
Low ferritin can suggest iron deficiency anaemia and you very likely have this too. Ask your GP to carry out an Iron Panel and Full Blood Count and if iron deficiency anaemia is concerned then the treatment is 2 or 3 x ferrous fumarate tablets daily. 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.
**
Vitamin B12 102.5 (180 - 900)
Folate 1.5 (2.5 - 19.5)
You are B12 and folate deficient.
Check for signs of B12 deficiency here b12deficiency.info/signs-an...
You need to go straight over to the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc
Post your B12/folate/ferritin results, any iron deficiency anaemia information you may already have, and mention any signs of B12 deficiency you may be experiencing.
You will need intrinsic factor antibodies testing, you may have pernicious anaemia, you may need B12 injections, you will need folic acid prescribing for the folate deficiency but don't start that until further investigations have been carried out, and B12 must be started before 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."
**
Be under no illusion that these are all serious deficiencies that need immediate treatment. Don't let your doctors mess you around any more. If necessary, take someone with you to your appointment so that they can speak on your behalf if necessary. Someone needs to be assertive here, point out these dreadful deficiencies and that these are most likely the cause of your problems, not depression and anxiety and that you wish those diagnoses to be removed immediately from your record.
You should sack this endo for a start, if you want to continue seeing an endo then email dionne.fulcher@thyroiduk.org for the list of thyroid friendly endos, see who you can get to then ask on the forum for feedback. I would also sack this GP, see a different one at the surgery or change surgeries. Both of these doctors are dangerous and are keeping you very ill.
Get a treatment plan in place then make a formal complaint for negligence against this whoever has ignored these results.
Please come back and let us know how you get on.
TPO antibody 708.5 (<34)
TG antibody 573.3 (<115)
Thanks
Angelique
There we are, the root of your problem. Your high 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.
Doctors generally attach little or no importance to antibodies and have no idea how Hashi's affects the patient. You will have to read, learn and educate yourself so that you can help yourself here.
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.
Gluten/thyroid connection: chriskresser.com/the-gluten...
stopthethyroidmadness.com/h...
stopthethyroidmadness.com/h...
hypothyroidmom.com/hashimot...
thyroiduk.org.uk/tuk/about_...
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Hashi's and gut/absorption problems go hand in hand, and very often nutrient deficiencies are the result, and you have those in abundance.
The absorption problem needs addressing so that nutrients can be absorbed, nutrient levels need optimising so that thyroid hormones can work. See SlowDragon 's reply to this post for information and links on how to address gut/absorption problems healthunlocked.com/thyroidu...
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Your doctors, along with many more we hear about on the forum, have an awful lot to answer for, and they either need retraining or their licence removed.
I am adding SeasideSusie for her expertise on deficiencies.
I see she has already answered and your doctors have been very neglectful and don't let them list diagnosis which aren't true as doctors will only look at those and not realise everything is due to hashimoto's/hypo.
Endo has asked for depression and general anxiety disorder to be put on my medical records
You are entirely justified in asking for those diagnoses to be withheld. You need to be replete with your minerals and vitamins as the severity of your deficiencies would confound any diagnosis.
Refuse the 'diagnosis' on the grounds that your endo isn't qualified to make such a 'diagnosis', he is not trained in psychological disorders.
Vitamin D 14.3 (<25 severe deficiency) Way below the reference range: by clinical guidelines used in the NHS you're in need of loading dosages to rectify this.
Vitamin B12 102.5 (180 - 900) You are horribly below the reference range. If you haven't been investigated for B12 deficiency or Pernicious Anaemia then you should be. You also need loading doses by injection of B12 and guidelines indicate that these should start asap.
Ferritin 6 (15 - 150) There's a good chance that you have other blood test results from your FBC that back up what seems like an obvious iron deficiency/anaemia. This looks severe enough to justify iron infusions and SeasideSusie regularly quotes NICE guidelines to the NHS about that. If you need infusion and supplements, they must start quickly.
Folate 1.5 (2.5 - 19.5) Again, folate deficiency/anaemia and this needs to be addressed with folic acid supplements but these supplements *must not* be taken until the B12 investigations are done.
There are *huge* crossovers with iron, folate, and B12 deficiencies/anaemia all of which can create confusing numbers in some blood test results. You need careful management to resolve these.
ETA: Your results are lower than the ones here but it a way it doesn't matter as the suggestions and quoted guidelines are the same (scroll down to see Seaside Susie's comment and analysis): healthunlocked.com/thyroidu...
I'm assuming that your GP has seen these results and that you have an appointment in the very near future with a *different* GP.
If not, please make an appointment *as soon as you can* with the most competent GP in your practice. Discuss your blood test results and request the dosage adjustment and treatment for your multiple deficiencies. Explain that it is inappropriate for you to be diagnosed with depression etc. when there are so many contributory factors to your current physical state.
Please let us know that you have made an appointment and what the outcome is.
ETA: You've mentioned that you have H Pylori and Coeliac's Disease. Have you had a course of antibiotics to treat the H Pylori? Whatever, both of these are reasons for regular monitoring of your nutrient status and for treatment of your deficiencies.
Thanks I haven't been given antibiotics
If you had a diagnosis of H Pylori, what was the treatment?
Anyway, have you made an appointment with another GP?
Yes I see GP tonight, no treatment given for h pylori
Makes notes of everything Seaside Susie has said, including the clinical guidelines, in case you need to mention them.
Good Luck!
Can I post back how I get on?
Please do - we genuinely want to know the outcome for you as your results are horrible.
How did you get on at the appointment, Angelique5 ?
Hi,
I normally post on the Pernicious Anaemia Society forum.
Vitamin B12 102.5 (180 - 900)
Your B12 is well below range. This flowchart indicates that in UK, people with B12 deficiency should have an Intrinsic Factor Antibody test for Pernicious Anaemia.
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
B12 deficiency can affect many body systems and can have a huge impact on mental health.
Lots more info about B12 on Pernicious Anaemia Society forum on HU.
Pernicious Anaemia Society (PAS) website
pernicious-anaemia-society....
B12 books
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn Hooper is the chair of PAS.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive book about B12 deficiency with lots of case studies.
I hope you get the help you need.
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
I am not medically trained just someone who has struggled to get a diagnosis.
So your GP did coeliac blood test, which was positive, but did not refer you to gastroenterologist or for endoscopy. That is seriously negligent
GP has not advised that you need to be strictly gluten free. That is seriously negligent
All your vitamin levels are dangerously low, yet GP has done nothing. That is seriously negligent on 4 separate accounts
Your thyroid levels are above range, yet neither endo or GP have increased your dose of Levothyroxine. Again seriously negligent by both
Absolutely refuse to allow diagnosis of depression and anxiety to be put in your medical notes.
An endocrinologist is not qualified to make such an assessment. This particular endocrinologist does seem capable of managing any patients at all.
If they want to persue that then they have to refer you to psychologist for full assessment. Not just pick up "bonus" of £1600 for doling out antidepressants that you don't need
Suggest you take a supportive member of your family with you to see a different GP
Consider formal complaint about both GP and endocrinologist once you are on road to recovery
Email Louise at a Thyroid UK for list of recommended thyroid specialists louise.roberts@thyroiduk.org.uk
Hi new here do I have absorption problem?
Should I accept GP advice for dose reduction?
Please Help me :( - updated 19th Sept
Help understanding Thyroid results
