Follow up appointment - Help Please!: OK, so... - Thyroid UK

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Follow up appointment - Help Please!

Aeracognie profile image
12 Replies

OK, so having started at a new GP and getting my bloods done (results to follow, all i was told over the phone was TSH 2.2 and TPO either 117 or 170 - it wasn't a very clear line) my GP has asked me to come in for a general check up prior to attempting to refer me to an endo/get advice from an endo regarding my treatment. My appointment is tomorrow and I was wondering if anyone had any advice for things I should ask them to check if they don't automatically? They mentioned weight and blood pressure, but i'm not sure what else to expect. Last time i was referred the endo rejected my referral because my TSH was in normal ranges. I want to try and do what I can to help it along. My husband and I are planning to start a family soon as well so i'm trying to get in the best possible place health wise.

I've redone the symptoms list to see what i am still experiencing, made a note of when i got put on medication and when i went gluten free, and i plan to mention i was allowed medication due to TPO not TSH and was never formally given a diagnosis (pretty sure it is Hashimotos as everything matches but it would be nice if a doc could confirm properly) but as my last surgery hasn't sent any of my notes over to my new surgery yet they are dealing with me blind and vice versa.

Any advice appreciated!

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12 Replies
Judithdalston profile image
Judithdalston

Your TPO appears to be high as I assume the range was in the 0-34 IU/mL region- thus you do have Hashimoto's. You have already adopted a recommendation related to Hashi, which is to try a gluten-free diet ( even dairy free), but that might be a step too far if you are aiming to get pregnant too. You say you were allowed medication, but not specific on what and for how long. Your TSH is in 'normal range' but hypothyroid sufferers aim for under 1, which can also be within range. Perhaps because you are a new patient , without medical notes, your new doctor thinks you should have a 'MOT'. Tell the doctor that you know Autoimmune Thyroid patients often get low vitamin/ mineral levels , due to poor gut absorption, and since you want to get pregnant soon you would like these at optimum level- then you might get some blood tests done within NHS. Ideally good thyroid health needs Vit D, B12, folate and ferritin at higher than 'normal' ranges- so try to get these tested via your GP. If you want more info. re these levels/ supplement regime etc look up SeasideSusie's various excellent posts. Might be worth taking an early morning urine sample too for general check eg sugar in urine, though this might be abit specific and you don't have symptoms of diabetes, or infections. Have you your last prescription to show what your previous doctor gave you, to take along?

Aeracognie profile image
Aeracognie in reply toJudithdalston

I have been on 50mcg Levothyroxine since start with no change. TSH has always been within normal range. TPO was 183iu/ml before adopting gluten free and starting medication. I've been on medication and gluten free since 2015.

Aeracognie profile image
Aeracognie in reply toAeracognie

I have also been receiving my prescription from this surgery (I changed surgeries in january) so they know my current dosage. All that needed was a telephone consult to tell them

Judithdalston profile image
Judithdalston in reply toAeracognie

Perhaps your gluten free diet has made a difference then, hope the TPO is at lower 117. Since I replied last happened to read more info re guidelines to treat hypothyroidism, and it stresses good thyroid management before pregnancy, so I hope your doctor will give you it. it is unusual to be on starter dose of 50 mcg for so long without increase, but you don't seem to be having any symptoms to suggest you need more; 75 mcg should send the TSH down, but not having FT4 and FT3 results it might not be suitable. The higher dose would not improve TPO. If you were referred to an endocrinologist what would you expect he/she to do? Remember this forum helps many who have found their endocrinologist knows little about thyroid problems and are really diabetic specialists ( I had one!). Good luck tomorrow.

Aeracognie profile image
Aeracognie in reply toJudithdalston

To be honest I don't know what I expect of an endo. I just would like to be in a position where I have an actual diagnosis on record, and am discussing my treatment with someone who either knows what they are talking about or is willing to accept that I do. I have been given no medical guidance, everything I know is from here and my own research. When I got put on the levothyroxine it had been 7 years of visits to the doctor to get to that point. So I didnt want to rock the boat at the time and when they didnt change it i didnt question. Now im conscious that my levels should be better for conception, and that I should have had dose adjustments that weren't offered to me and I just hope this GP takes me seriously.

Jazzw profile image
Jazzw in reply toAeracognie

A TSH of 2.2 is too high for someone on levothyroxine - we say here that most hypo patients feel better with a dose that takes TSH levels below 1.0. 50mcg levo is a starter dose - not a replacement dose! I would ask to have my dose raised to 75mcg in the first instance and for a retest 6 weeks after commencing the raised dose. Don’t be fobbed off - there’s nothing about your results that would contraindicate raising your dose - it would likely make all the difference to your ability to conceive.

Aeracognie profile image
Aeracognie in reply toJazzw

Thank you, I will try to push for adjustment to my dose.

Hi, you do have hashimotos which is shown by ur high antibodies. You should get Izabella wentz book the hashimotos protocol, it has evening in there you need to know to feel better 🙂 there's a book by Dana trentini about pregnancy with thyroid issues too that is helpful. And iv said it once today already on here but i wouldn't expect an endo to be any help or have any more knowledge than a gp, mine told me I should feel lucky and grateful I had a tsh of 22 when I spoke to him about pregnancy. It's definitely a case of helping yourself 🙂 x

Aeracognie profile image
Aeracognie in reply to

I'll have a look for the book :)

SlowDragon profile image
SlowDragonAdministrator

TTC you must have vitamin D, folate, B12 and ferritin tested

Do you supplement for any of these

Good levels of folate and B12 needed for baby's development

Aeracognie profile image
Aeracognie in reply toSlowDragon

I tried to ask for a full panel for this set of blood tests and got refused and told they can only request TSH and TPO and that the lab then decides if they need to rest more. I'm hoping when I get the print out tomorrow there will be more on it. I'm taking a folic acid supplement but not anything else at the minute.

Aeracognie profile image
Aeracognie

That is exactly my concern but last time I mentioned it to a doctor I was told I couldn't be referred or given any information until I was actually pregnant. I dont want to wait until they decide I have a fertility problem to resolve a problem that could be fixed now.

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