Hi new to site, I have received a letter from endo saying I have generalised anxiety disorder? Hypothyroidism diagnosed 2013.
I am confused by the diagnosis he's given me and I don't know why he would put this.
Taking 100mcg levo
Thanks
TSH 5.4 (0.2 - 4.2 mIU/L)
Free T4 13.8 (12.0 - 22.0 pmol/L)
TPO antibody 604.5 (<34 IU/mL)
TG antibody 278.3 (<115 IU/mL)
I would suffer from anxiety if I had an endo that thought TSH 5.4, fT4 13.8 was adequate treatment. Assuming you are from the UK check him out on the GMC website to see if he is on the specialist register although I'm not sure how you check he is qualified as an endocrinologist (although incompetence seems to be a primary requirement).
On the serious side I'd get something put on your medical record that this is an unfounded diagnosis and quote the above results.
He also wrote TPO and TG antibody positive?
Of course both TPO and TG antibodies are positive. Can't he interpret blood results written in black & white in front of him? !! You are very under medicated. Perhaps your body is unable to convert T4 (levo) into the usable thyroid hormone T3 (liothyronine). You are able to do a private genetic test to check if you have the defective gene (as I do). Regenerus do it - regeneruslabs.com/page/home.... There are a lot of choices on their website so phone them and ask about the DIO2 test, they are very helpful. It costs around £150.
Have you had your vitamin B12, vitamin D, ferritin and ferrous levels checked?
Thanks yes they've been checked. I used to supplement but gave up after my levels didn't rise that much
Your Endo or GP should have looked into why your levels didn't rise. You may have an absoption problem which is common with hypothyroidism and your levels won't rise very easily if you're left hypothyroid and without enough medication.
I'm afraid there have been a lot of people writing on this forum over the last few months whose Endo is writing this kind of 'opinion' on letters to doctors. An Endo is not qualified to make a diagnosis of generalised anxiety disorder.
I would definitely write and refute the letter and ask for the 'opinion' to be removed from your file on the basis that your TSH is too high and you have been left undermedicated.
The DIO2 polymorphism has minor effects on cognitive ability, so it depends on what your symptoms are, can you describe what problems you are having. It also looks like the Regenerus test is testing for the wrong thing, I put a question to them in September but never got a reply. I will put this on a separate post.
Cold intolerance, hard stool, puffy eyes, eyebrow loss, heavy periods, joint pain, slow movements, memory loss
I thought he was an ok specialist because he wrote TPO and TG antibody positive meaning Hashimotos (I think) but when I saw the anxiety comment I just don't know
Next time I'd see that endo I'd punch him/her in the face.
When my endo put my dose way too high too quick and I started to experience hyper symptoms he accused me of having panic attack and wanted to put that on file not even checking my blood results. I got so furious and started to shout at him and even open the door so other people could hear me. There were no stupid notes like that in my files after that.
We have had several similar cases recently ....i wonder if its same useless endo
Probably a diabetes "expert", not thyroid, many are
You are extremely under medicated.
Have you been on higher dose? Had T3 stopped recently?
You need 25mcg dose increase and retest in 6-8 weeks.
All thyroid tests should be as early as possible in morning, fasting and don't take Levo in 24hours beforehand, delay until immediately after. This gives highest TSH and most consistent results
Can you post your vitamin levels and ranges
Here is reply from SeasideSusie the supplements expert to low vitamin levels
healthunlocked.com/thyroidu...
Plus post about where levels should be - also see my reply about gluten and hashimotos etc
healthunlocked.com/thyroidu...
excellent video series - free for next few hours
thethyroidsecret.com/specia...
Thanks never been on higher dose of meds and all thyroid results done fasting, early morning and I never take thyroid meds for 24 hours before blood draw.
Ferritin 37 (15 - 150)
Folate 2.39 (2.50 - 19.50)
Vitamin B12 301 (190 - 900)
Vitamin D total 28.8
(<25 severe vitamin D deficiency
25 - 50 vitamin D deficiency
50 - 75 vitamin D may be suboptimal
>75 adequate)
Taking 800iu D3, been on this since 2014. Complete blood count and iron panel showed iron deficiency anaemia as well. Was under haematologist but not anymore. B12 used to be higher than this too.
All much too low - see SeasideSusies reply above
Gluten free, plus addressing low stomach acid, improving gut bacteria with probiotic and bone broth all likely to help significantly
If you can't get GP to sanction increase in Levo email Louise at Thyroid UK for list of recommended Thyroid experts
Louise.roberts@thyroiduk.org.uk
Good suggestions as IMO it sounds like there could be SIBO/Leaky Gut issues. If you aren't eating lots of vegetables and cutting back on sugars (aka Junk, soft drinks, sweets, cakes etc) now is the time to start. You need a diet as close to natural as you can get with as little processed foods as possible to get your bowel functioning normally.
I would add digestive enzymes to what was said above. NB sell a good one. Drinking Celery juice will sort your stomach acid. Just 16 ounces of fresh celery juice every morning on an empty stomach can transform your health and digestion in as little as one week.
Peachy
I honestly don't know what to say any more. So many, many posts are saying the same as you. Endo 'diagnosing' anxiety disorder or mental illness when it's not their department, but what is actually very obvious from all of these posts that these endos don't have half a clue between them on how to treat hypothyroidism and when Hashi's is involved they are totally and utterly out of their depth. There's also a lot of 'Blame the Patient' going on where patients are being told they're abusing their medication, being non-compliant, and when they say they are taking their Levo as prescribed they're told they're lying.
**
So, as far as your nutrients are concerned:
Ferritin 37 (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 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...
Complete blood count and iron panel showed iron deficiency anaemia as well. Was under haematologist but not anymore
Why are you not being treated for your iron deficiency anaemia? Why are you not under a haematogist any more?
Your iron deficiency anaemia needs treating - see NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):
cks.nice.org.uk/anaemia-iro...
How should I treat iron deficiency anaemia?
•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.
Some haematologists repeat iron infusions or ask for the patient to be referred back to them if their ferritin goes below 50. Ask why this hasn't happened for you.
**
Folate 2.39 (2.50 - 19.50) Vitamin B12 301 (190 - 900)
You are folate deficient and need folic acid prescribed.
Do you have any signs of B12 deficiency b12deficiency.info/signs-an... If so you need to post on the Perncious Anaemia Society forum healthunlocked.com/pasoc
Have you supplemented B12 or had injections?
**
Vitamin D total 28.8 - Taking 800iu D3
Well, 800iu D3 isn't going to ever raise your level. It is hardly a maintenance dose for someone with a reasonable level. 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/
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.
**
Your Hashi's is messing everything up and your endo knows s*d all what to do about it.
You have gut/absorption problems to have such poor nutrients. These absorption problems mean that supplements can't be absorped, if your nutrient levels aren't optimal then thyroid hormone can't work. Everything needs to be addressed.
For the Hashis - gluten free and supplementing with selenium l-selenomethionine 200mcg daily can help reduce the antibodies, as can keeping TSH suppressed.
For the gut/absorption problems - check out all the information in that link SlowDragon has given to the post she made yesterday healthunlocked.com/thyroidu...
For your thyroid - an immediate increase of 25mcg Levo and retesting as SlowDragon has mentioned - 6-8 weeks time and another increase if necessary, and repeat these 6-8 weekly tests/increases until your symptoms abate and you feel well.
Everything needs to be addressed and it all works together.
Thanks for reply I don't supplement B12 or have injections. I was discharged after the iron infusion because the haematologist said everything in the iron panel and complete blood count were in range.
But now they're out of range again, and your GP must know this, then you need something done. Ask your GP to refer you back or to treat you himself, you have the relevant guidelines above. You can't just leave it, you've got to fight for this and get something done.
Do you have signs of B12 deficiency? Like I said, if you do then post on the PA forum for advice. If you don't then say so and we can suggest supplements.
Are you going to ask your GP about your folate deficiency?
We can point you in the right direction, but only you can get this sorted.
Thanks I will post on the PA forum now because I have symptoms of B12 deficiency and I will ask about folate deficiency. I will discuss with GP about the iron as well.
If your vitamin D was below 25 in 2014 you should have been given loading dose. Not just 800iu
We see 100's of people inappropriately given 800iu for YEARS, and levels barely move.
GP's have little idea about vitamin supplements and especially how Hashimoto's causes such dire gut function
Better You vitamin D mouth spray is good option as it avoids gut
Either 5000iu or 2 x 3000iu for 2-3 months and retest
See SeasideSusie detailed advice above
Severe Vit D deficiency which requires loading doses, not 800iu, it must be loading doses - see NICE treatment summary for Vit D deficiency:
"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/
Hi, as others have said, the diagnosis of anxiety disorder is rubbish. I had anxiety too when I had exactly the same TSH as you - 5.4. But because the NHS upper normal limit in Glos is 5.5 my doctor told me there was nothing wrong with me and dismissed me quite angrily. But the upper normal TSH limit in your endo's test is 4.2 - so you're clearly under medicated. As your T4 is just within the normal range, it might be called sub-clinical Hashimoto's. After finding a private doc in Bristol, I'm now properly treated and warmer, slimmer, with more energy, not anxious and depressed and my hair and eyebrows have come back. Please DON'T accept this endo's mis-diagnosis. So I suggest you read up on Hashimoto's (including sub-clinical) on STTM (Stop the Thyroid Madness), Izabella Wentz and other websites. If you can be well informed and resolute and look for someone willing to listen to you and give you the help you need, it will be well worth the effort.
hello, I wonder if you could post me privately giving me the name of the endo in Bristol that you have been to see that is sympathetic to those of us with thyroid problems. I have been to see someone, who is really more of a diabetic consultant and is very rigid and narrow in his treatment of thyroid issues. I am due to see him soon, and know that he will say I am on too much treatment, when I am really just optimal. I would be grateful, thank you Ann Simpson
Hi, maybe post this as your own question rather than on someone else's post where it will get lost?
Is this endocrinologist/doctor on TUK's list, please? If not, would it be OK for you to let TUK know who it is so that the name can be added to the list for the benefit of members who are looking (list available from TUK)?
Find a new endo! There is no scientific test for "general anxiety disorder" - it's a personal opinion. Your bloods show that you are undermedicated - over range TSH and low in range FT4 - I bet your Free T3 is rock bottom. It might be worth emailing louise.roberts@thyroiduk.org for the list of doctors with a more of a clue.
Hi Peachy86
Sorry to hear you have had shabby treatment from an endo. Your blood results speak for themselves that you need more thyroid hormone. Ignore the Endo he’s talking rubbish!!
Keep posting on here and you will get better soon xxx
Ah the old anxiety bollocks. Sorry i don't know anything to help you just couldnt help chipping in. I was sent away from a&e after a so called panic attack but when i looked at my blood results i was under range or low normal for usual markers (haemoglobin, rbc etc). Ive since had a b12, ferritin and folate test all of which were at the very bottom end of normal.
Mine is nearly the same (TSH5 .3)and was told by 'private'endo "its not that bad and GP doing everything right"
Still undiagnosed thyroid issues!
Thyroid results help please?
THYROID ANTIBODIES SHOULD YOU HAVE ANY AT ALL?
Is it thyroid, is it not 
