For about 5 years now I have been suffering from low thyroid/ hashi - like symptoms.
I have 4 members of my family diagnosed with Hashimoto (they live in Poland), my mum who lives in the UK has only been able to get an underactive thyroid diagnosis as "no need" for hashi diagnosis because "treatment is the same", her GP said. Like me my mum started to experience symptoms in her 20s, however, was only diagnosed in her 40s and is currently on a very low dose of levothyroxine. Her symptoms still persist, many of which we share.
I have now had three blood tests done in this 5 year period, each time meeting the "normal" lab ranges, despite having symptoms like:
My last test was done in November 2017, and I have only just been able to retrieve it as my doc said no need for follow up due to being "normal".
These are my results:
Serum TSH - 3.95 mU/L (lab range 0.3 - 4.2)
Free T4 - 12.4 pmol/L (lab range 12 - 22)
My testosterone was also high (I was suspecting PCOS) - at 1.8nmol/L (range 0.3 -1.7)
Serum iron tested at 13.2 umol/L (11 - 36)
My folate tested at 8.1 ug/L (2.9 - 50)
From reading, it looks like I am exhibiting a Hashimoto pattern of high TSH and low T4, which at the moment just about falls into the normal ranges. Many experts state that optimal level of TSH should be between 0.4 and 2.5, as 9 in 10 people have 1.4 as their TSH result.
I have just gone to get another test, this GP was a bit more knowledgeable, however, failed to test me for T3 and rT3 as well as other bits, she did however ask to test for some antibodies.
My question to you is - when you're feeling terrible for years and it is affecting your everyday life, what do I do if I get another "normal" result? I cannot bear to keep going back and forth and getting nowhere. Does anyone have any advice?
Written by
hashitag
To view profiles and participate in discussions please or .
Ask GP to test both TPO and TG thyroid antibodies and for testing for PCOS too, plus vitamin D
PCOS and autoimmune thyroid disease (Hashimoto's) are often linked
Yes Hashimoto's is completely ignored by majority of medics in UK, no wonder Treatment is so bad
Iron is on low side ask for ferritin test
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
All thyroid blood tests should ideally be done as early as possible in morning and fasting.
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamin
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Your Mum sounds like she needs better treatment too
On Levothyroxine dose should be increased in 25mcg steps until TSH is between 0.4 - 1.5. She also needs FT3 and FT4 plus vitamins testing
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
People who get Hashimoto's often have family members who have thyroid disease or other autoimmune diseases, suggesting a genetic component. However your family seem to have a dominant genetic disorder which requires only one parent to pass it down, so there is possibly a different underlying cause.
There is a genetic condition which could explain the high incidence of thyroid problems in your family: Impaired Sensitivity to Thyroid Hormone (more often known as Thyroid Hormone Resistance). It causes hypothyroid symptoms and requires very high T3 levels (often above the top of the normal range) in the body to overcome the resistance.
Doctors seem to diagnose Hashimotos's based on TSH and Free T4. Hashimoto's can only be diagnosed accurately by testing antibodies and Free T3. It is possible that some diagnosed as Hashimoto's are not correct.
Impaired Sensitivity to Thyroid Hormone does however cause all types of autoimmune disease, including thyroid disease.
Thanks Hugh, my Polish family members have all had their antibodies tested, some were in thousands. My aunt had to have her thyroid removed as it was destroying itself.
When i tested for antibodies in 2016 privately I had around 50 units detected - which by comparison to my nieces wasnt high at all, but they were there.
People who get Hashimoto's often have family members who have thyroid disease or other autoimmune diseases, suggesting a genetic component. However there is no evidence of Hashimoto's as a dominant genetic disorder which requires only one parent to pass it down, and cause a high incidence such as is seen in your family. Therefore the Hashimoto's in your family may be a secondary condition with a different underlying cause.
It would be very useful to have a free T3 test, as T3 is the active thyroid hormone which controls almost every cell in the body and therefore the symptoms. As Hashimoto's causes hypothyroidism it would be expected that the Free T3 would be low.
I’ve been going to GP every few year since early 20 with what i felt were hypo symptoms. Family history both parents all female members of family, both you get sisters, also PA and other genetic auto immune blood issues.
Antibodies tested & US scan as nodule on thyroid...diagnosis Hashimoto’s with an attack of thyroiditis....treatment nothing as all results in range!!! Wait till it fails was the advice...but no follow up testing out in place!
B12 was however low...put just in range, so they wouldn’t treat either, so I’ve taken to self injecting (oral obviously hadn’t worked as I tried before) and I feel a lot better. Definitely worth getting this checked, that and cutting out gluten...2 things you can control whilst GP does not much!
I’m going by how I feel and definitely feel nodule gets bigger & voice alters when I’ve had to much gluten for a few days. Settles when I cut right back / out again.
Not sure if impact on bloods as don’t see the point in seeing gp again and not paying out again for gp to suggest I’m fine!
I hope that my story might be of some help in suggesting a next step for you.
I really sympathise with your situation. For several years I too had felt very ill. I had nearly lost hope of ever feeling well again until I went to see a consultant endocrinologist who was willing to think outside of the box.
I was told for several years by my GP practise that my blood test results were within normal range and I was sent home without a diagnosis or any treatment. Many times over the years I was told that no action was necessary and that I was perfectly healthy. But actually I was feeling dreadfully ill and nobody was listening to me.
In desperation I decided that I'd had enough and I booked a private appointment to see a consultant endocrinologist.
At the appointment the consultant explained to me that TSH testing is a blunt instrument and GPs have little understanding of the complexities of thyroid disorders. He told me that he regularly saw patients whose thyroid conditions had been missed by GPs.
I understand that approximately 5% of hypothyroid patients need a TSH level that falls outside of the official NHS range in order to feel well. We do not of course have our TSH measured when we are feeling well, and the optimum TSH for each of us can vary considerably.
My consultant endocrinologist actually listened to my symptoms ( which I now realise read like a classic check list for hypothyroidism) and took them in to account when diagnosing me. He ran a series of blood tests and also reviewed the print out I had brought with me of my previous tests stretching back over several years. He put all of this together and was then able to correctly diagnosed me with Hypothyroidism.
I asked my consultant why my GPs had failed to diagnose me after multiple thyroid blood tests over several years. He explained that most GPs just didn't have the necessary expertise to interpret thyroid blood test results correctly. They just stick rigidly to the questionable NHS definition of "normal" TSH levels.
My consultant then sent authorisation to my GP that I should be given enough T4 to reach a TSH of 0.01
I now feel very well.I don't ache any more, I no longer faint and my memory loss has stopped.
As I understand it, only consultants can authorise a dose of medication that aims to alter your TSH level so that it is outside of the NHS "normal range". GPs can actually lose their medical license if they deliberately medicate you to a point where your TSH is outside of the NHS advised range. Perhaps this situation goes some way to explaining the poor treatment thyroid patients experience at GP surgeries.
Generally GPs just aren't sufficiently trained in the very complex field of thyroid disorders to spot patients who don't fit the usual mould. Based on my experience, I would strongly recommend that if possible you should consider paying to see a consultant endocrinologist privately for a more expert opinion and wider medication options.
Some consultants are happy for you to self refer. It is a myth that you always need your GP to refer you. Some endocrinologists are happy for you to just phone up and book a private appointment with them directly .
If you do go to see a consultant take along a print out of previous blood test results from your GP surgery. (You have a legal right to obtain a copy of your blood test results, but you may be charged a very small fee for the printing .)
It is possible that perhaps like me, you will need a TSH level that is outside of the official NHS range in order to feel better again. In that case your medication would need initially to be supervised by a consultant endocrinologist.You may only need to pay for one appointment privately and from then on your GP can carry out the consultant's instructions.
Don't expect GPs to understand this complex condition.They don't have the specialist training. Go to a good consultant endocrinologist.
Hi Jen15, your situation sounds identical to what I’m going through! Please can you private message me your endocrinologists details. Thanks in advance
Hi Jen, I'm going through the same with my GP surgery. Spoken to 3 GPs all claiming Hashi is hyper not hypo, can't even be bothered to read their own website. Antibodies test positive for autoimmune hypothyroidism. Current TSH level 6.8, two months ago TSH 14.6. Won't refer me to an Endo as they feel they have the knowledge and training to deal with my thyroid. I have been to hell with my symptoms for 2 years now. Feeling desperate. Could I have your consulant's details please?
I would create your own post with your results and ranges. That way more people will see it and comment on a way forward for you ... It appears you need treatment and members can point you towards helpful papers to show your GP - who seems to lack thyroid knowledge ... 😊
Thyroid UK can supply you with a list of sympathetic endos. Unfortunately my endo retired recently. Do not wait to be referred by a GP to see an endo. As I mentioned in my post, often you can just ring up yourself and book to see a consultant. Just take along a print out of your NHS blood test results. Good luck.
I would like to ring someone who I know will be knowlegeable and understanding straight away as financially I cant afford to make mistakes - thanks again
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Full test results from thriva - but what now?? How do I start feeling healthy, energetic and start losing excess weight? 
Symptoms but normal TSH? 
