Endocrinologist Phoning Tomorrow

[AlphaWolf5195]

Hi Everyone

I have just had a phone call saying that an endocrinologist will phone me tomorrow. Although this is mainly for my low sodium I am hoping to turn the conversation to Thyroid as well.

The fact that the appointment is tomorrow, has thrown me a bit and my brain has completely forgotten everything I was going to ask.

I want to make a list of questions etc to ask them, I am hoping that they might let me have a trial of T3 as I don’t convert T4 to T3 very well.

Does anyone have any suggestions of questions I should ask them?

I am going to tell them my symptoms and ask whether it could be due to low sodium or thyroid in the hopes we can get onto the subject of Thyroid.

For reference I have included my blood test results from below from the last few Thyroid tests I have had. My GP at the moment keeps lowering my dose of Levothyroxine.

Jan 2024 on 100/125mcg alternate days

TSH 2.5 (0.27-4.20)

June 2024

TSH 0.02 (0.27-4.20)

FT4 20.4 (11.9-21.6)

FT3 4.1 (3.1-6.8)

June 2024 Doctor reduced Levothyroxine to 100mcg daily

August 2024

TSH 0.03 (0.27-4.20)

FT4 17.1 (11.9-21.6)

August 2024 Doctor reduced Levothyroxine to 75mcg Mon, Wed, Fri and 100mcg Tues, Thurs, Sat and Sun

21st October 2024

TSH 0.09 (0.27-4.20)

FT4 19.6 (11.9-21.6)

October 2024 Doctor reduced Levothyroxine to 75mcg a day

Many thanks for all your help.

[JumpJiving]

AlphaWolf5195 Not sure how low your sodium is. Have you been given a reason for it being low? Has your potassium been tested? If so, is it high by any chance? If so, ask for an early morning cortisol test.

[AlphaWolf5195 in reply to JumpJiving]

Many thanks for your reply below are my sodium results and potassium results from this year. My sodium has been below range for over 10 years and my potassium is always within range but it’s at the lower end of the range.

Sodium blood test results 2024

4th Jan - 129 (133-146)

9th May - 127 (133-146)

12th August -124 (133-146)

21st Oct - 128 (133-146)

29th Oct 127 (133-146)

Potassium Results 2024

4th Jan - 4.4 (3.5-5.3)

9th May - 3.8 (3.5-5.3)

12th Aug - 3.6 (3.5-5.3)

21st Oct - 3.8 (3.5-5.3)

29th Oct - 3.6 (3.5-5.3)

I have had low sodium for over 10yrs. Approximately 5 years ago I was hospitalised when my sodium dropped to 114 approx (although I did have pneumonia at the time which is why they thought it had gone so low). When I was in hospital I asked whether it could be the Tegretol (Carbamazepine) I take that could be causing the low sodium, one of the doctors told me that I had been tested in the past and it showed that the Tegreol did not not have any affect on my sodium levels whereas another doctor during the same stay in hospital told me it was probably my Tegretol causing it to be low, so I have no idea.

[JumpJiving in reply to AlphaWolf5195]

 AlphaWolf5195 Low sodium with high potassium can suggest Addison's disease, which is sometimes seen in combination with other bits that you have mentioned, but as your potassium is ok I would not be concerned about Addison's or doing the early morning cortisol test

[JMN2017]

Hi AlphaWolf

I have had similar issues re needing my T4 (Levothyroxine) to be high (out of range) to feel well. I went privately for a few months and was given NDT which was great. I'm now with NHS Endo who agrees me having T3 (Liothyronine) and 100 mcg Levo.

However, she's decreased the Levo, only a tad, but I don't feel so well. I'm hoping she'll agree to increase the Levo back to 100mcg daily when I speak with her end Dec. I suspect my 'normal' thryoid levels are fairly high, as it took years of testing before I was out of range with TSH.

I don't have the other issues you have, although I have different issues and meds, of course.

I do hope you can get sorted, as quickly as possible. Hoping all goes well during your upcoming appt

[AlphaWolf5195 in reply to JMN2017]

Thank you

I’m really glad you managed to get some T3. Hope you can get your levothyroxine adjusted so you feel better again.

Unfortunately I can’t afford to go private at all so this really is my only hope. The problem I have is I never know which illness is causing which symptom because so many of them overlap.

I just hope I have an endocrinologist who is willing to listen and help.

[JMN2017 in reply to AlphaWolf5195]

Thanks

I can understand what you're saying. Also, with such naff GPs you have, it must have been total nightmare. I would have thought they would have referred you a long time ago so it can all get properly sorted.

I really hope you find you can talk to the Endo and they they 'listen' and 'hear what you're saying' which your GP clearly doesn't.

I wish you all the best for your consultant meeting/phone call

[AlphaWolf5195 in reply to JMN2017]

Thank you.

I was originally referred to endocrinology for sodium 10-15 years ago. I had 3 appointments over approx 12-18months. The problem I had was I saw a different endocrinology registrar each time I went and they all had completely different ideas. The last one I saw said my body was used to that level of sodium so that was ok, then referred me back to my GP. The fact that I had numerous symptoms didn’t matter, according to them that beacuse I had ME/CFS. Doctors are so keen to blame all symptoms on that and not anything else.

My GP has referred me back to endocrinology because I have recently been diagnosed with kidney stones, and told to increase my fluids every day. I know from past experience this messes up and drops my sodium levels. At the moment I’m having to have dioralyte to try to stop them from dropping too low.

I’m just taking the opportunity, as I know she won’t refer me for hypothyroidism, to try to get that sorted at the same time.

[JMN2017 in reply to AlphaWolf5195]

Yes, I agree. Too easy for doctors to blame such conditions for anything they don't understand. Such a shame they can't take the trouble to either find out or find someone who does know. They just don't have the time, these days.

I wish you well

[SlowDragon Administrator]

what are most recent vitamin D, folate, ferritin and B12 results

[AlphaWolf5195 in reply to SlowDragon]

Many thanks for your reply. I don’t seem to have had a blood test for these since January 2024.

Blood Test Jan 2024

Serum 25-HO vit D - 99 (no range)

Serum Ferritin - 120 (12-150)

Serum Folate - 18.3 (8.8-60.8)

Serum B12 - 623 (145-569) (although I was on 100mcg daily at the time)

After this blood test my GP reduced my B12 to once a week instead of daily and my ferrous sulphate from alternate days to once a week.

[SlowDragon Administrator in reply to AlphaWolf5195]

Folate - Serum 18.3 ug/L (8.8 - 60.8) 

Folate only 18.3% through range

Suggest supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help maintain B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

[AlphaWolf5195 in reply to SlowDragon]

Many thanks for your reply and the links to the posts..

I’ll look into a B complex. Would it be alright to take that while I am still taking the vitamin B12 (100mcg once a week)? I also drink a smoothie most days which has added vitamin C vitamin B1, B2, B6 and vitamin E in it.

If my Folate is in range but in the lower part of the range do you have any idea whether this would make a difference to my red blood cell count?

I have had a low red blood cell count for a while now, not sure exactly how long because I only have test results from January. My GP just says that it is just how I am and it is normal for me.

My GP has finally referred me to a haematologist after having low white blood cell count for approx 2 years. She only referred me because the rheumatologist I saw told her I should be referred to haematology. I am hoping they can find out the cause of both my low white blood cell count and my low red blood cell count.

[SlowDragon Administrator in reply to AlphaWolf5195]

low white blood cell count linked to being hypothyroid, especially autoimmune

whitelotusclinic.ca/lwhite-...

Low RBC

palomahealth.com/learn/hash...

[SlowDragon Administrator in reply to AlphaWolf5195]

If my Folate is in range but in the lower part of the range do you have any idea whether this would make a difference to my red blood cell count?

Yes could do

nhs.uk/conditions/red-blood...

A low RBC count could also indicate a vitamin B6, B12 or folate deficiency.

[JMN2017 in reply to AlphaWolf5195]

Just seen this.

Why did GP feel your Ferrous Sulphate needed reducing? I would have thought being at Serum Ferritin - 120 (12-150) would be optimum, especially with all your other health problems, or am I not understanding something?

[AlphaWolf5195 in reply to JMN2017]

Many thanks for your reply.

I have no idea why she reduced the dose. I told her that I don’t seem to have had a blood test since January and I had my dose reduced then. She just told me that although my red blood cell count is low, it’s always low and isn’t any lower than normal for me therefore my iron levels must be fine.

I’m waiting for an appointment with a haematologist so hopefully they will sort everything out, including checking my iron levels.

[JMN2017 in reply to AlphaWolf5195]

Yes, one would hope the Haematologist will be able to correct it, if deemed necessary. Hope the reduction doesn't result in you feeling worse.

Look forward to hearing your news after you've seen the Haematologist

[ElRR]

Do you take biotin or any multivitamin or b complex vitamins? And if so, do you stop them for several days before getting your tests done?

[AlphaWolf5195 in reply to ElRR]

Many thanks for your reply. I don’t take biotin or multivitamin or b complex at all although I do have ensure compact meal replacement drinks on days when I’m too exhausted to eat properly. I know these have vitamins etc in them not sure what, I’ll have to check.

[humanbean]

I can't offer any suggestions, but you might find these links of interest :

Electrolyte Imbalance : en.wikipedia.org/wiki/Elect...

Sodium Deficiency : en.wikipedia.org/wiki/Hypon...

Sodium Toxicity : en.wikipedia.org/wiki/Hyper...

Potassium Deficiency : en.wikipedia.org/wiki/Hypok...

Potassium Toxicity : en.wikipedia.org/wiki/Hyper...

[AlphaWolf5195 in reply to humanbean]

Many thanks for the links. I’ll have a look at them, I’m sure they will help.

[JMN2017]

Hi

Did your phone call materialize today? If so, how did the consultation go? I hope you managed to turn the conversation around to cover your other issues.

Love to hear how everything has gone today

[AlphaWolf5195 in reply to JMN2017]

Thanks you for asking. Phone call was terrible, endo was useless, I’ve made a new post about it if you want to read. I feel the people on here are so much more knowledgeable and helpful than any of the doctors I see.

[JMN2017 in reply to AlphaWolf5195]

Oh, I'm SO sorry to hear this. I can understand as I've experienced a useless Consultant Endo, just a couple of years back. Heaven only knows what the GP told him (probably face-to-face, at some medics gathering) He was rude and clearly not prepared to help me at all. Hmp!!!

So, where does that leave you, or is it too soon to ask? I'm sure you'll be totally devastated at the moment. I certainly would be, I have to say.

I'm a good listener, if you want to 'talk', or connect via Facebook Messenger, if you want to chat (no obligation, of course )

Take care

[AlphaWolf5195 in reply to JMN2017]

Many thanks for your reply.

To be perfectly honest, at the moment, I’m just numb. There’s nothing I can do. Oh well, I’ve survived like this for years, I can continue surviving. Would have been nice to not feel ill all the time (I’m housebound and often bed-bound) but I have my family around me so I’m ok. I think it would be much harder without the support of my family.

This endo was useless with the sodium as well as the thyroid. Told me that he couldn’t make sense of what a previous endo had written so therefore the test and the result the previous endo had done were wrong.

I have seen 4 different endos for sodium, I seem to see a different one each time, and 1 many years ago (prob 20-25yrs) for thyroid, there is always the chance that one day I will be seen by an endo who understands thyroid and will be able to help me.

Thanks for the offer of a chat unfortunately I don’t have Facebook.