Hi, my first post...I'm new here...Hashimotos just properly diagnosed after years of struggling - looking for advice please
Hi everyone.
I'm really hoping that I can get some help from this community after what has been years of struggling and being made to feel like I was neurotic by medical professionals.
If I may bore you with my story to give you the full context.
Around 2013/14 I noticed that I was starting to gain weight. Only about a stone at this point but I was struggling to get it off even though I wasn’t eating or exercising differently to my usual routine. Brushed it off and put it down to getting a bit older (turning 25/26). Life carried on as usual as I was a ‘curvy’ slim woman.
Skip forward to the end of 2015. In the space of 3 months I put on 2 stone. Again, I wouldn’t say I particularly changed my diet, and if anything, I was doing more exercise, but yet, still the weight just kept piling on. 3 stone in total so far.
2016, I start to experience truly AWFUL mood swings. To the point where I considered whether I had a serious mental disorder at the time. I suddenly became a very anxious person and experienced what can only be described as a massive personality change, going from an outgoing confident person to a shell of my former self with serious anger issues and constant anxious thoughts. I still had days and moments where the old me was there and I certainly put forward a confident face in public, but the ‘new’ me lurked around the corner and showed herself a lot. Less concerned about the mood swings, (at the time I put this down to a new birth control, nexplanon) I finally went to see my GP to discuss the weight gain as I had just got engaged and wanted to feel the best version of myself on the big day. I was given a number of blood tests, most around my thyroid. The results came back that I was just over the limit of what would be described as normal (sorry I can’t remember whether it was TSH or t3 or t4) and I had low vitamin D levels. In my ignorance, I presumed this meant I would be put on thyroxine! Answer: no, you are only just over the limits and you can have another blood test in 3-6 months.
Later on in 2016 – Have repeat blood tests and all thyroid levels are now in the range of ‘normal’ so no thyroid medicine for me. Start to starve myself just to feel semi-attractive in wedding dress. Manage to lose about a stone but it is a real struggle and I barely ate anything.
Early 2017 – Weight gain continues. I have now put on another 2 stone so 4 stone in total since 2013. Due to educating myself around symptoms I am convinced something is wrong with my thyroid. Go back to GP’s. Am made to feel like a neurotic and self-involved young woman who only wants to look good on social media (I do not have social media so they got this wrong). Doctor suggests I join the NHS weight loss programme and gives me a card to self-refer. I leave in tears and berate myself for my lack of willpower and resolve to try harder to lose weight.
2018 – I have gained another stone, so 5 stone in total now. Reluctant to receive an invite to self-flagellate, and failing to lose weight despite trying so hard, I save to visit a private GP. Private GP orders a much wider set of thyroid tests. Tests come back and everything is normal apart from my thyroglobulin antibody which is 580 (normal range 0-115). Private Dr starts me on thyroxine as he thinks I have Hashimotos. Elated to have something confirmed to show I am not mad, I take my results to my GP.
GP refers me to an endocrinologist at the local hospital. Armed with pictures of my ‘former self’ and a list of my symptoms, which by this time also include massive temperature fluctuations, thinning hair, thinning eyebrow ends, stretch marks due to massive weight gain, depression, anxiety, tiredness, mind fog, sore joints, skin which barely heals when cut, bruising, dry skin. Take husband along for moral support. Sit in the room and am again dismissed as neurotic by an endocrinologist. Endo goes off on a dog leg to give me a test to establish whether I have sleep apnea (what???), when I don’t pass the test for sleep apnea, he seems to lose even more interest in my case. I pull out the pictures to show him how I used to look. He seems visibly shocked, looking between the pictures of current me and old me. ‘Yes this is my moment…we’re getting somewhere now!!’ I start to think. It is not! He tells me there is nothing he can do for me and makes me feel like I have wasted his time. I am also told to stop the thyroxine which I have only been on for about a month. ‘But what about my thyroglobulin antibody results?’ I protest. ‘This is not relevant’, he responds. Husband now starts to join in with support to help me as I am now crying in desperation. Endo maintains party line – ‘the thyroglobulin antibodies are irrelevant’. … ‘But what about Hashimotos?’ I ask. He responds that Hashimotos is diagnosed by TPO and mine is normal. Every piece of research I have done has told me that this is not the case, but hey, he’s the specialist and I am not, so what do I know and how can I possibly argue with my limited knowledge with an expert?! Deflated, I leave his office and struggle on my own for another 6 months.
Mid 2019 – Still feel like something isn’t right and I have gained another stone. 6 stone in total now. Pluck up the courage to go to GP. Have a new GP and she is lovely. I cry with relief. New round of blood tests ordered. Blood tests come back. Again, a very basic NHS tests so antibodies are not included …and surprise surprise, I’m in ‘normal ranges’ in every area so there is nothing she can do for me. Fall into black pit of despair again for another 6 months.
January 2020 – Realise I can’t go on like this. Decide to fight for myself and ask to be referred to another endo at another hospital. GP uses this appt to categorically tell me that I do not have Hashimotos and I need to stop fixating on this but gives me the code for a referral anyway. Second Endo comes back to GP and tells her that he will not accept a meeting with me because previous endo was clear that I do not need Endo management and I am wasting his time. I am deflated but refuse to give up. Ask for another referral to a third hospital. GP looks at me like I’m crazy but reluctantly gives me access code to try for another hospital.
Finally accepted by an Endo at third hospital trust in June 2020. He is lovely, listens with care and is one of the few medical personnel who haven’t made me feel like a neurotic loon. Asks lots of questions and is clearly diligent. First step is a catscan. Due to covid-19 wait is around 3 months.
Catscan reveals a fairly large lump on my thyroid - 2cms by 1.5 cms. Next step is radioactive scan in October to establish whether lump is on my parathyroid. Results come back. It’s not parathyroid. Referred to have a fine needle aspiration in early December to see if it is cancerous.
FNA appointment is a very strange experience. The Dr. taking the sample states to me that I am aware that everyone so far suspects the lump is not cancerous. I inform him that I have not been made aware of this, I have been told that they are not sure, hence the FNA and ask, why, if this is the case, I am even being sent for an FNA? He reluctantly agrees to give me the FNA. Results in 2-3 weeks I am told.
Christmas day – wake up to a text telling me a cancer specialist wants a telephone apt with me on NYE. Not good I think, however, let’s see…
NYE – have appt. Cancer Dr confirms that I do not have thyroid cancer but I do have Hashimotos as confirmed by one large lump and lots of small lumps over my thyroid. This is the first time I have been told about the small lumps too, so whilst elated that I do not have cancer, I am confused as to these new small lumps being mentioned all of a sudden. Cancer Dr is very confused as to why I do not seem happier and says he will release me back to Endo as I clearly have a lot of Hashimotos-related questions that are not his speciality to answer.
End Jan – Letter through post. I have an Endo appt on the 3rd Feb (next week).
So, my questions to the community are –
-How do I convince my Endo to let me try some form of medicine-based intervention, even though all of my thyroid results, bar one, are within the ‘normal’ range?
- Has anyone else suffered a massive weight gain like mine (6 stone), even though their TSH has remained relatively low throughout years of testing?
-Can anyone help me to make sense of my results, as I must sadly admit I am still very confused about where results should sit in relation to one another, even if they are within the ‘normal range’?
Any and all advice would be massively appreciated, as I am keenly aware of how important my appointment this week is.
My last set of thyroid blood tests, just for reference, are:
TSH – 1.18 (standard range 0.3 – 3.05)
Free T3 (triiodothyronine) – 4.67 (standard range 2.5 - 5.7)
Free T4 (thyroxine) -12.68 (standard range 9-23)
Thyroid Peroxidase Antibodies - 1.42 (standard range 0-5)
Antithyroglobulin antibodies – 72.88 (standard range 0-40)
With much thanks and appreciation for any help or insight you can give me.