? Going private and who would you recommend

[SR1980]

Hi have been diagnosed with hypothyroidism for 6 years and have been on Levothyroxine 75mcg. Bloods ok but still feel exhausted, muscle aches and pains at times. Weight gain, irritable, and feel warm all the time. Was thinking of going private to endocrinology to see what else can be done to feel normal again. Who would be good to go to in Belfast/Lisburn and has anyone seen a consultant and feel their symptoms are so much better going private.

[Marz]

Hi and Welcome !

Before spending lots on seeing an Endo privately it may be better to share a few things here and see if we can help for Free !

Do you have your latest thyroid test results with ranges ? Do you have Hashimotos ? Have you had vitamins and minerals tested ? B12 - Folate - Ferritin - VitD ? How much Levo are you taking and how do you take it ? Any other medication ?

Apologies for all the questions 🌻

[SR1980 in reply to Marz]

Thanks Marz for replying. I have had numerous bloods taken over the years for everything as have always felt like this. Get thyroid tests done every 6 months and doc says they are ok. Take Levo in morning 75mcg with glass of water in the morning an hour or 2 before breakfast. Spoke to doc again regarding symptoms and getting a pile of bloods taken again on Wednesday. Just fed up as getting no answers why I still feel like this.

[SeasideSusie Remembering in reply to SR1980]

SR1980

Bloods ok but still feel exhausted, muscle aches and pains at times. Weight gain, irritable, and feel warm all the time

"Bloods OK" just means that they're in range, but it's where within the range that is important. Muscle aches and pains can be low Vit D. Weight gain can be undermedicated and an increase of Levo indicated. Feeling warm is not a common symptom of hypothyroidism, most people feel cold.

Do you know what blood tests are being done on Wednesday. Ideally you need

TSH

FT4

FT3

Thyroid antibodies

Plus vitamins mentioned below *

For thyroid tests we always advise

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

If you're not booked for an early blood draw, I would strongly recommend that you change your appointment.

Once your tests have been done, give it a couple of days then ask for a print out of your results from the receptionist. Don't accept verbal or hand written results as mistakes can happen, always a print out which will show the result plus the reference range.

Once you have your results, post them on the forum, including the reference ranges, for members to comment. It could be that although your results have previously always been within the normal range, they might not have been optimal, and it's optimal results that we need.

* If Vit D, B12, Folate and Ferritin aren't included in your tests, ask for them to be done, these also need to be optimal for thyroid hormone to work properly. What you're looking for with these tests are:

Vit D - 100-150nmol/L or 40-60ng/ml

B12 - top of range for Total B12 (around 9000-1000pg/ml or ng/L is recommended)

Folate - at least half way through range

Ferritin - half way through range

[SR1980 in reply to SeasideSusie]

Thank you so much for all this information I will get a print out and take Ur advice on board

[Marz in reply to SR1980]

Always always obtain copies of your test results with ranges if you are not able to access them on-line. Then you will know what has been tested and what has been missed !

Impossible to find wellness without optimal results and without you posting them here we would only be guessing as to the cause of your symptoms.

[Lora7again]

That is quite a low dose and you probably need an increase of 25mcg. For example my Dad is on 100mcg of Levothyroxine a day because he is classed as elderly at 78.

[Gingernut44 in reply to Lora7again]

Yes but Lora7again , you need what you need whatever your age 😊

[Lora7again in reply to Gingernut44]

I agree I think he needs more because his TSH is about 5 but he tells me he feels ok. He also has COPD so he is very breathless so he does put a lot of symptoms down to that. I have noticed his hair has thinned all over and it doesn't look like male pattern balding to me. He won't disagree with his GP and won't listen to what I say so I have given up now.

[fuchsia-pink]

I agree with Marz ! I need an endo to get lio - but get my advice from this forum - which has much more time and seems infinitely more knowledgeable

If you want to go private, I'd suggest the best first step is a full suite of private blood tests as Marz has listed - ie not just the TSH and f you're lucky free T4 your GP does. Lots of posts here abut private testing and offers/discounts.

[NWA6]

Boucha! I’m NI but live in England. All my family are still in County Down 🤗

I would advise you to post your results here first before going private. You’ll get a wealth of info and might even feel better without having to pay out. Do you have Hashi’s? I know that in NI only endos are allowed to do FT3 testing so you might have to do something like Medichecks to get a full panel of results. You could also do the Vit/mineral testing at the same time. This would be a better way to spend your money (starting price around £100). If after all that you still think you need a private Endo I have some names that my sister rates. I think they’re at The Ulster. Message me if you want that info cause we can’t talk openly about individuals.

[SR1980 in reply to NWA6]

Thanks all I know is that I have hypothyroidism doc hasn't mentioned hashis. Might test T3 as the doc said she is going to test all my other bloods on Wednesday. Should know better end of the week. Thanks so much

[Marz in reply to SR1980]

T3 is very rarely tested inthe NHS - in spite of it being the most important test.

[SR1980 in reply to Marz]

Marz if I do a home kit for thyroid if any results come back abnormal does the GP get the results or bring them to private endo?

[Marz in reply to SR1980]

Results are sent to you by e-mail. Post them here in a new post and members will help ..

[NWA6 in reply to SR1980]

I really doubt that your GP will test FT3, it is only done under a consultant in NI. Here in England I get mine tested every time but I still prefer to go private because I can get my Vits/minerals done too. Also means I have very little to do with my GP and so then I’m more in control.

[SR1980]

I was looking at the long term effects of levothyroxine and nearly all my symptoms are on it. Don't. Know if it's my bloods or side effects of medication.