Doctors appointment on Monday – Pointers, advice please...?

[Gilbo72]

I am on 112 Mcg of Levo. So back in September, I had some symptoms of stiff aching muscles and sore tendons that were getting progressively worse which prompted me to get a (private) blood test in September, which came back with:

Ferritin: 63.1 ( 13-150)

VitD: 86 (deficient<25)

VitB12: 224 (insufficient 145-250)

Serum Folate: 16 ( 8.83-60.8)

TSH: 3.18 (0.27-4.20)

Total T4: 106.6 (66-181)

FT4: 21.10 (12.0-22.0)

FT3: 4.10 (3.1-6.8)

Since September I have been feeling progressively worse with new symptoms: Constant headache, some hair loss, some pins and needles, lethargic, slight nausea and the new one is my thyroid feels slightly swollen and glands in neck are up, just this last couple of weeks.

I took this too my new GP, who ran her own tests just last week, which came back as the attached pic.

Things to note are the high serum creatinine level (kidneys), and the low T3: 3.3 (3.70-6.70) (TSH and T4 were not tested by GP!! I am assuming because she had my private test results and could see my conversion was poor).

My B12, has gone up a bit since September, but still not great.

I am worried about my kidneys as this is not the first time my serum has been high. I have had slight kidney ache too. Plus in the past I once had gout!!

So I have been called back to see the GP on Monday, I am hopeful she is going to be amazing ;). I want to try and work with her to get my conversion up and want to be on the ball about exactly what I need to ask her to do etc. I am hopeful she will refer me back to the endo who I haven't seen for several years, although I am thinking of going private to a good one who has been recommended.

So I know it has probably been all said before, but I just want to be really clear. So what do I need to ask/request?

So I understand that B12, VitD Folate and Ferritin all need to be good for conversion to work. What levels should they be? Are there certain types of Ferritin, Folate or B12 that are superior to others if she can prescribe anything?

Is there anything else?

So I am thinking of asking straight out for a trial of T3??

Are my bloods generally ok otherwise?

Sorry if I have been told it all before, but I need a clear plan of action for this new GP because I am hoping she is going to surprise me!... fingers crossed

(Ps, how do you format text in these posts?!)

Thanks for your time

X

[Nanaedake]

Ask your GP to explain your GFR test result which above is 63. Ask whether this could impact absorption or utilisation of levothyroxine. Ask why your creatinine levels are elevated and whether you can improve kidney function.

Keep a check on potential urinary tract infections and get treated immediately - something else you could ask GP about. GP should have tested FT3, FT4 and TSH together as you really need to read all 3 together to get a clear picture of thyroid function.

[Gilbo72 in reply to Nanaedake]

Thanks Nanaedake

What is GFR? I missed that...

[Gilbo72 in reply to Gilbo72]

Oh I've just googled! Does that mean I do have some kidney damage?

[Nanaedake in reply to Gilbo72]

I don't know, you have to ask your GP. Kidney looks like it's presently slightly below normal range but I'm not medically qualified. Perhaps it could fluctuate? You need to explore further though.

[silverfox7 in reply to Gilbo72]

It stands for glomerular filtration Rate so itsxsaying how good your kidneys are at doing their job. I.e. Taking out the rubbish. Usual problem when it is low is that you aren't drinking enough fluids so keep yourself better hydrated and see if that helps.

[Gnomic]

Hi can I ask how you went about getting a private blood test? GP’s don’t test T3 & T4 now. I’m interested in your outcome though because I recently suffered with very achey muscles, excessive lethargy and achey kidneys. In the end my Levo was increased to 100 which has made a difference but I don’t want it to keep increasing. Thanks

[Gilbo72 in reply to Gnomic]

Hi Gnomic, are you in the UK? I used an online company called Blue Horizon Medicals. I chose and ordered a blood test online, they send it out to you. Depending on the test you either do it yourself with a finger prick (they supply the equipment and instructions) or they organise for you to go to your local private hospital and have it done there. You then post it back to them next day delivery. There is another company called Medichecks that a lot of people use here that is the same. I chose BH purely on the money off offer they had at the time!

[SlowDragon Administrator in reply to Gnomic]

Gnomic

The dose we need, is the dose we need. Many need more than 100mcg. So don't be surprised if you need further increases

Bloods should be retested 6-8 weeks after any dose change. All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Levothyroxine dose is slowly increased in 25mcg steps, aiming for TSH around one, FT4 towards top of range and FT3 at least half way in range, or some need FT3 in top third

Most people eventually need somewhere between 100mcg and 200mcg Levothyroxine

Low vitamin levels are extremely common and need regular testing

Most/many on Levothyroxine need to supplement vitamins regularly to maintain levels so that thyroid hormones can work well. But testing FIRST before starting supplements

Some people are poor converters and then may need addition of small dose of T3

[Highland49]

Hi Gilbo72,

Your aches could be caused by low vitamin D and you pins and needles by low vitamin b12. Are you supplementing with B12 or in a complex to explain your increase in your blood test result? Sadly, supplementing falsely raises the blood serum level but doesn't reflect what is actually reaching your cells. Pins and needles can be a neurological symptom of low b12 and should be treated with alternate day injections, as per the BNF/NICE guidelines.

The optimum for b12 is 800+, ferritin 80+, folate 17+ and vitamin D 100-150 nmol/l. As you have thyroid disease, chances are you won't absorb supplements well and would do better with, for example, a vitamin D spray. (And taken with vitamin K2 and magnesium).

Have you had your reverse t3 checked and antibodies checked for Hashimoto's? As your FT3 has dropped, you might not be converting thyroxine well. Again you can have these done through the private companies. Medichecks discount thyroid tests on Thyroid Thursday.

[SlowDragon Administrator]

You probably need dose increase in Levothyroxine

Can't see recent TSH or FT4. Obviously FT3 is below range

TSH should be around one

[SlowDragon Administrator]

healthunlocked.com/thyroidu.....

Your total T4 shows there's plenty of room for dose increase in Levothyroxine

Poor conversion probably not helped by low B12

What are you supplementing? If anything

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial. Eg Igennus Super B or Jarrow B-right

B vitamins best taken in the morning after breakfast

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

As you have symptoms of low B12 (pins and needles) you may find adding sublingual B12 needed too. Initially perhaps 2 or 3 per day at 1000mcg. Then likely can reduce slowly over next few months

Don't expect GP to recognise low B12 with these results

Informative link about low B vitamins and low vitamin D

drgominak.com/sleep/vitamin...

Perhaps look at getting DIO2 gene variation test

bluehorizonmedicals.co.uk/t...

thyroiduk.org.uk/tuk/testin...

[Rudy1 in reply to SlowDragon]

THANK YOU for the article on vitamins. I have never read about taking vitamin b in order for vitamin d to work.

[SlowDragon Administrator in reply to Rudy1]

Most GP's are clueless about interactions between hypothyroidism and low vitamins

[Rudy1 in reply to SlowDragon]

Yes and my endocrinologist is also clueless. He is baffled by my joint and muscle pain.

[SlowDragon Administrator in reply to Rudy1]

Are you on strictly gluten free diet?

Joint pain is often gluten intolerance

Low FT3 obviously likely to be underlying issue

Push for dose increase

Roughly where in UK are you?

[Rudy1 in reply to SlowDragon]

Also, yes I have tried gluten for for 5 months and unfortunately that didn't help. I have recently added b12 and selenium, and zinc to see if that helps. Thank you!

[Rudy1]

Slow dragon - I had blood work done today to check all my levels including folate, ferritin and b12. I have never had those tested. I am in the US.

I can't tell you how helpful this group has been. So thankful for you.

[SlowDragon Administrator in reply to Rudy1]

Suggest you put a new post up, with results and members can advise