Still waiting for referral for second opinion

[Shylton]

Hello, I have Hashimoto's thyroiditis. I posted three months ago asking for help in understanding my blood test results and I was amazed how knowledgeable so many of you were and embarrassed that I had not tried to understand my condition better. I asked for a second Endo opinion as I have no confidence in the existing consultant, that was in January, and still waiting. In the meantime I have been under the care of trainee GPs, who I have to say seem to be trying to help. In trying to convince me that TSH levels do not fluctuate they took regular TSH bloods (results below) and I am to have another TSH in the next few days. In the meantime three weeks ago the Dr increased my Thyroxine from 100mcg to 125mcg. I am still waiting for a referral date to where-ever I will be accepted. I have told the GP I will go anywhere as long as it is not the specialist I have been seeing.

Date Test Results Ref Range

June 2018 TSH 0.46 [0.35 – 4.94]

June 2018 TPO ab > 1999.0 [0.0 - 5.9]

May 2018 TSH 3.24 [0.35 – 4.94]

May 2018 ESR 9.0 [1.0 - 20.0]

April 2018 TPO ab > 1999.0 [0.0 – 6.0]

April 2018 TSH 1.3 [0.35 – 5.00]

Is there any other test I should ask for whilst waiting to see a consultant? I feel that I must take a more proactive approach whilst waiting just not sure what to do.

Thanks in advance.

[Judithdalston]

Are the TSH results the only true thyroid blood tests you have had to show you have hypothyroidism, ie you are being given 125 mcg levothyroxin just based on this? Obviously you have Hashimoto's with thyroid autoimmune antibodies, which in themselves cannot be treated with medication, although a low TSH may help it, many find a gluten free , even dairy free, diet helps. I am sure you were told previously how Hashimoto's is characterised by poor gut absorption, thus many sufferers have poor nutrients levels, whether derived from food/ drink or supplements, so it is essential to get VitD, B12, folate and ferritin tested. These results should be at optimum levels in the upper part of the ranges ( see SeasideSusie's regular replies re. Vit/ min levels and supplements). Your Gp tends to only provide supplements, whether tablets or injections, if your levels are deficient. Many of us get these tested privately ( thru labs like Medichecks or Blue Horizon), and also have full thyroid checks with TSH, T4, FT4, FT3 from one blood draw ( Reverse T3 is expensive and doesn't add greatly; you don't need antibodies tested as you already know you are Hashimoto's). Why do you need a second opinion: you have Hashimoto's, you are getting levothyroxin from your Gp surgery despite the fact many have to wait to their TSH is 10 plus. Your TSH is now under 1. And the members of this forum are probably more supportive, and experienced, than many medics?

[Tile in reply to Judithdalston]

It's not just poor gut absorption it's about Hashis being associated with gene mutations C677 and or 1298 which lower the MTHFReductase enzyme which is involved in detoxing toxin buildup in brain and body. In the USA these mutations are ALWAYS discussed that's why some (not all) Hashis still have complaints even when their thyroid levels are ok. Migraines, anxiety, mood disorders, and other ailments are also common with these mutations. In USA this is always brought up ...guess because it's a lot easier to get these tests done from insurance or ancestry sites. A homocysteine test is good to have done ....this is why most Hashis have to keep their serum folate high to lower homocysteine. No one on this forum has ever brought this up. In USA it's the main topic sometimes with Hashis. Read up everyone spread the word.

[Tile in reply to Tile]

Ps Someone did mention it 3yrs ago. Just read the post now. It is below yours on my screen. Everytime I tried to type MTHFR someone in administration blocked the post. Hope this time they realise it's not a curse word. Or maybe they don't want this topic brought up again.

[Tile in reply to Tile]

Ps Reverse T3 is a good test to get.done it'll show how good of a converter you are with T4 to FT3. If it's above 15 it shows there is.a problem somewhere. Also SHBG test will help show if the meds are getting into cells not just pooling in blood. It's easy to get these tests in USA but over in UK probably a different story. Feel sorry for the people who can't afford private testing it's unfair and shameful.

[Angel_of_the_North in reply to Tile]

rt3 is actually not a very useful test - if it's high it shows there is a problem but it doesn't tell you what the problem is. You can see conversion by comparing the Free T3 with free t4. If free t3 is much lower in range than free t4 (and TSH is under 1), you have a conversion problem. It's rare to get the NHS to do free T3 so you may need to book private tests with Blue Horizon or Medichecks

[Shylton in reply to Judithdalston]

I was diagnosed in 2002 but my system is erratic, although felt so much better once I was on Levo, I felt I got my life back. I want second opinion as twice now the usual consultant has taken me off levo totally over the last few years and now he wants to do it again but he doesn't give me a good enough reason. In fact he acts as if I have no right to question him. I turned into a static blob the last time. My gp feels that I should obey the consultant but she can't explain to me why he wants me off totally.

[Judithdalston]

Are you in the Uk , keep the tests simple Shelton? Just some thoughts re American treatment ( compared to Uks)....Reverse T3 just shows something is wrong and waste hormone has been converted, unused, to be disposed off in blood, but not necessarily why. RT3 etc is an expensive test ( look at Medichecks etc to see price difference). Poor T4 to T3 conversion - look at ratio fT3 to Ft4 - it should be between 1:3 to -1:4 for good conversion. Pooling of T3 can't happening due to its short half life- eg down 50% first 24 hours, 25% 48 hours etc. There is not really any advantage in GB knowing if you have DIO2 etc as you will be unlikely to find an endocrinologist ( or CCG) who would give you T3 without proof of need thru blood tests.

[Shylton in reply to Judithdalston]

Thank you for all the info. I am in UK. It is hard to understand that if this is such a common condition why follow the one type of meds suits all approach, that is just a average statistic.

[Angel_of_the_North]

You need a full thyroid panel. The antibodies show that you have autoimmune thyroid disease (Hashimoto's) but there are no results for your actual thyroid hormones.

You need:

Free t4

Free T3

TSH

Foalte

B12

Ferritin

Vit D

You already have an antibody result.