Fluctuating results is driving me nuts, however... - Thyroid UK

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Fluctuating results is driving me nuts, however I think my Endocrinologist is now on my side.

MCP80 profile image
MCP80

I did post a few weeks ago for the same this but though I would add more results, For years my results have fluctuated drastically and the Drs had just increased and decreased with the results. Last year I moved to Lincolnshire and after a year of the Endocrinologist messing with my medication they finally have realised I am unique (or a pain in the arse!)

Jan 18 150mg daily

TSH 7.8 (0.27-4.5)

FT4 16.1 (11-23)

March 18 150/175mg alternate days

TSH 0.02 (0.27-4.5)

T4 31.5 (11-23)

April 18 150mg daily

TSH 0.53 (0.27-4.5)

FT4 25.7 (11-23)

FT3 4.53 (3.1-6.8)

May 18 150mg daily

TSH 59.3 (0.27-4.5)

FT4 14.9 (11-23)

FT3 3.37 (3.1-6.8)

June 18 150mg 5 days a week and 175mg 2 days a week

TSH 3.6 (0.27-4.5)

FT4 24.2 (11-23)

FT3 4.65 (3.1-6.8)

The consultant did order a RT3 with the last results but that either hasn't been done or hasn't come back yet.

My vitamins and minerals are optimal as I supplement and have done for quite a while and had blood test done in April.

My consultant wanted to see my test results from June before adding T3 medication as they now have a case but has anyone else had this problem with fluctuating results?

Thank you

MCP

20 Replies
SeasideSusie profile image
SeasideSusieAdministrator

MCP80

Of course your results are fluctuating. You have Hashi's. Remind your Endo that you have autoimmune thyroiditis (their term for Hashi's) and that is the reason for the fluctuations. So you're no more unique than all the other Hypo patients who have Hashi's, which accounts for about 90% of hypothyroidism. Just a shame doctors don't attach much importance to antibodies and Hashi's.

Are you strictly gluten free and supplementing with selenium l-selenomethionine 200mcg daily to try and help reduce the antibodies? Keeping TSH suppressed can also help.

Have you read up about Hashi's?

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

One can see clearly from those results that you have Hashi's - even without know if you've had your antibodies tested! It really doesn't take a genius to see that. They are typical results for a Hashi's person. Your doctors should be ashamed that they don't know that, and know that the way to stabilise your massive swings is to bring your TSH down to zero and keep it there. :)

MCP80 profile image
MCP80 in reply to greygoose

Hi Greygoose and Seaside Susie,

Yes I have Hashi's and have done since being diagnosed in 2005. My results have never been stable and I cannot get them to keep below 1 no matter what we do.

Yes I am supplementing with Selenium and strictly Gluten and Lactose Free and have been for years. I just don't know what else to try as we have tried so far everything that we can. I have even changed brands of Levothyroxin a number of times with no difference. I am waiting on the prescription for T3 and a referral to the Tertiary consultant in London as my consultants are stumped with how to keep my results low. I have moved around a lot which hasn't helped but my numbers swinging this badly all the time is exhausting and I cannot afford to lose my job so was hoping any suggestions on anything else I could try. I also do not lose my Hypo symptoms either when it is down at the lower end below 1.

Thank you

greygoose profile image
greygoose in reply to MCP80

What's the highest dose of levo you've been on? It shouldn't be that difficult to suppress your TSH if you take enough levo. But, taking T3 should do it. So, don't despair. :)

MCP80 profile image
MCP80 in reply to greygoose

Highest dose I have been on is 300mg daily. It suppresses at 150mg but doesn't stay suppressed. So then I increase my medication until it is suppressed then I get awful palpitations so have to reduce the dose and it goes up and down trying to get an optimal dose which I never find. My GP is fantastic and mt Endocrinologist have listened but it will not and has never stabilised since 2005. I am hoping T3 is going to work but I am not counting on it. If it does its a bonus :)

shaws profile image
shawsAdministrator in reply to MCP80

It is about time they realised you cannot convert T4 (levothyroxine) into sufficient T3.

Levothyroxine (T4) is an inactive hormone and it has to convert to T3 (liothyronine).

We have millions of T3 receptor cells in our body and they all need T3.

If you are a poor converter of T4 you wont feel well. If they add T3 it should be in a 3 to 1 combination (T4/T3).

I cannot convert T4 so take T3 only and that works for me.

You could have something called Thyroid Hormone Resistant which few Endocrinologists or Doctors are aware of. This means that we need large amounts of T3 in order to saturate of T3 receptor cells and relieve our symptoms.

web.archive.org/web/2010103...

People who are thyroid hormone resistant need large doses of T3. Dr Lowe (deceased) who himself was resistant took 150mcg of T3 daily (middle of the night)

MCP80 profile image
MCP80 in reply to shaws

Thank you Shaws, that was my thoughts as my FT3 is always lower end of the range and this was the thoughts of the consultant who wanted RT3 tested to hopefully try and help provide evidence. I will check over the next couple of days to see if the results come in. I am converting some as I do have some FT3 but it never goes up in relation to how much T4 I have.

greygoose profile image
greygoose in reply to MCP80

OK, but I hope you keep an eye on your FT3, because that's the most important number. And it's not about stabilising, it's about optimising.

Have they not considered that you might have a pituitary problem, and investigated that?

MCP80 profile image
MCP80 in reply to greygoose

No nothing been mentioned about that. I might bring that up at my next appointment thank you.

greygoose profile image
greygoose in reply to MCP80

Oh dear. Your doctors might be very nice people, but they don't know much about thyroid, do they. :(

MCP80 profile image
MCP80 in reply to greygoose

No they don't they are diabetic specialists with an interest in Thyroid there is 1 consultant but I can't seem to get an appointment with him. My GP highlighted this which is why they are going to refer me to a tertiary consultant who is a Thyroid specialist.

greygoose profile image
greygoose in reply to MCP80

Well, let's hope he knows a bit more about it. :)

SlowDragon profile image
SlowDragonAdministrator in reply to MCP80

You probably need a MRI of brain to consider an element of secondary hypothyroidism due to poor pituitary function or disrupted HPA acid

But likely you just need some T3

Have you considered doing DIO2 gene test?

thyroiduk.org/tuk/testing/D...

MCP80 profile image
MCP80 in reply to SlowDragon

No I haven't as never been discussed. Prior to now i have always been told it isn't my thyroid causing the problens but my GP has convinced them it is. Most consultants I have seen have been diabetic specialists so I have only just started being more direct with them. I will have a look into it thank you.

SlowDragon profile image
SlowDragonAdministrator in reply to MCP80

DIO2 not available on NHS

If test positive for DIO2 it may help you get NHS T3

MCP80 profile image
MCP80 in reply to SlowDragon

Thank you. My consultant was just waiting for my latest results to make sure my levels had gone down and will be writing a prescription for a trial on T3 as I now satisfy the criteria so hopefully I won't need to do that test then.

SlowDragon profile image
SlowDragonAdministrator in reply to MCP80

I found it helpful argument, when after extremely successful 3 month trial, NHS were reluctant to authorise GP to continue prescribing.

MCP80 profile image
MCP80 in reply to SlowDragon

Oh that is a shame but they are right under the NHS England recommendations only Secondary care should prescribe as it needs to be monitored correctly and GPs do not seem to have the knowledge to correctly monitor patients on T3 but in my opinion neither do some consultants as they know so little about it. It is so difficult to get what we need to feel well. I am a little concerned that when my prescription comes through they don't give me the correct dosage instructions as my current consultant had to ask the Multi Disciplinary Team for help eith me and anotjer consultant suggested a trial of T3. This could be interesting!

SlowDragon profile image
SlowDragonAdministrator in reply to MCP80

Standard way to proceed is endocrinologist starts trial and prescribes for first 3 months.

Assuming trial goes well, on going care and prescribing is passed to your GP. At that point GP can refuse (the cost of Liothyronine comes out of GP surgery budget), or their CCG may push them to refuse.

You may be in situation then, like many, where endo says you need it, but CCG refuses to fund or GP refuses to prescribe.

Depends on the policy of your local CCG. My local CCG (Oxford) policy is that if NHS endo says you need it, then you get it. But I had to know the facts and stand my ground and present plenty of paperwork in support

oxfordshireccg.nhs.uk/profe...

Many, many CCG's (eg Brighton) try to say it's a blanket ban on prescribing, regardless of clinical need. This is directly against NHS England guidelines

bsuh.nhs.uk/wp-content/uplo...

You need to be ready to fight your case. Find out your local CCG policy.

Improve Thyroid Treatment campaign on Facebook have info on individual CCG's

Thyroid UK working hard to get this post code lottery resolved.

MCP80 profile image
MCP80 in reply to SlowDragon

It is a lottery isn't it. Thankfully my surgery is also pushing for a T3 trial. My doctors are different to standard ones so they don't come under CCGs 😁 I have started researching all the T3 information though so thank you for the links.

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