Hi, my first post...I'm new here...Hashimotos has just been properly diagnosed after years of struggling - looking for advice please

[Alex_bee]

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.

[prussianblue538]

Alex_bee, I can't help much but I want to say that you're not alone. I'm going through this and am used to being dismissed by doctors so can relate. Will be keeping fingers crossed for you. Good luck next week 🥰

[Alex_bee in reply to prussianblue538]

Thank you prussianblue538

[SlowDragon Administrator]

Welcome to the forum

Yes high TG antibodies confirms autoimmune thyroid disease also called Hashimoto’s....but NHS currently refuses to diagnose on only high TG antibodies

Majority of Hashimoto’s patients have high TPO or high TPO and high TG antibodies

Significant minority of Hashimoto’s patients only have high TG antibodies

20% of Hashimoto’s patients never have high thyroid antibodies

But at least you now have had ultrasound scan of thyroid and hey presto......what should have been blindingly obviously to endocrinologist .....you are hypothyroid

Next step is to get vitamin D, folate, ferritin and B12 tested. Plus coeliac blood test too

Was the thyroid result above done as early as possible in morning before eating or drinking anything other than water

[Alex_bee in reply to SlowDragon]

Thank you for your advice re further tests. I will ask for that. Annoying my thyroid test was done in the late morning and I had eaten a little

[SlowDragon Administrator]

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)

What is proposed re the large nodule?

It might be hot nodule, where it is making thyroid hormones regardless of TSH.....and therefore upsetting rest of thyroid

You are likely to struggle to get levothyroxine prescription with these results as TSH isn’t high

Ft4 is low

Suspect you have very low vitamin levels

Ask for coeliac blood test and all four vitamins tested

Suggest you push hard for trial of 50mcg levothyroxine

Bloods should be retested 6-8 weeks after each dose increase in levothyroxine

[Alex_bee in reply to SlowDragon]

I'm going to ask if it is a hot nodule as that could explain a lot, especially with my TSH seemingly so good. Thank you for advice, I wanted to push for a levo trial so it's good to know what dose to ask for. I get the impression they are going to leave the nodule in as I was referred to ENT for a consult on that and he seemed very blasé about it

[SlowDragon Administrator in reply to Alex_bee]

Essential to get vitamins tested

Suspect they will be low

[nellie237]

During the period I was going through the increases in medication and my weight was steadily rising I kept a food diary to show the GP that what I was eating didn't relate to how much weight I was gaining - over about 2 weeks. It helped get an increase in my case, but yours is a bit more complicated.....I gained about 2st overall, which I gradually lost later.

[birkie]

Hi Alex_bee.. ❤️❤️I totally sympathise with you I myself went through the same NHS, gp system only mine was hyper, I lost weight had all the symptoms of hyperthyroidism but the only bloods my gp and endos ever did were the TSH which showed my TSH was either suppressed or below range or just in range, this went on from about 2015 until my diagnosis in 2018 after I told my gp on several occasions I knew my problem was thyroid related but he kept saying YOUR BLOODS ARE NORMAL!!! , at that time I never looked at my blood results, as time went on I did, and challenged my gp on them to no avail I was sent to see endos but again bloods were OK.. I later hit on the idea that I was attacking my own thyroid making it go overactive, one endo even said its very hard to get a diagnosis as you really need to catch the thyroid when overactiveity is in progress, and I would assume its the same for an underactive thyroid with antibodies to. I had all the symptoms of an overactive thyroid but my gp or endos could not or did not want to see this because they were fixated on bloods, this is a very wrong attitude to take,, I eventually saw a new gp at my surgery who took one look at me and promptly diagnosed hyperthyroidism even without blood work, she did do bloods and hey presto it came back as hyperthyroidism, my regular gp who had been a general practitioner for many years it was his surgery couldn't even Diagnose me!!!.. Up shot was not good as I very soon went in to thyroid crisis my thyroid was very toxic and nearly put me in a coma I was in hospital for 12 days, then the thyroid had to be removed, the moral of my story is don't let these so called gps/endos have the last word, they can and are indeed miss diagnosing thyroid patients a lot, I myself are testimount to this as I'm sure are many more, keep fighting, as I said to my gp after the diagnosis " I told you it was my thyroid" total silence from him no apology no nothing, then several weeks after my discharge from hospital with thyroid crisis I saw him again he even had the cheek to say to me, " DO YOU REALISE HOW ILL YOU ARE!!! Well what he got back is to bad to put here, I avoid him like the plague now, also I always get print outs of all blood work, scans, anything I need to have done, I will never again trust them like I did all those years ago, I'm still fighting the good fight, medication is not good at the moment I'm struggling everyday but they will treat me they will look after me because what they did in not treating me sooner has left me here, so on I go.. You stick In their because its your health no one else's

Good luck.. ❤️❤️✊✊✊✊

[Bluespots in reply to birkie]

Yes I was not far off a thyroid storm spotted by excellent paramedic over the phone just in time. GP was useless. Got all my own tests done after that..they showed them to the GP. They were shocked by the results, and yet had left me not properly observed or medicated for a year. On the mend very slowly, but damage done to thyroid that was probs unnecessary. Good luck with recovering.

[McPammy]

I feel for you. My bloods first went out of normal range in 2003. I went back to Drs many times as I was feeling awful and putting on weight. He just kept saying I was suffering from depression and anxiety. I knew I wasn’t. It wasn’t until 5 years later they finally checked my thyroid bloods. My TSH was 36!(0.35-5.50). I was given Levothyroxine but still never felt much better. Eventually after becoming extremely unwell I found this site. I was advised to go private which I did. I found I am a very poor converter T4 to active T3. I was put on a T3 medication trial for 3 months. Oh boy it completely changed my life. I’ve now lost 4st of which I piled on when under medicated. I also did the DIO2 gene test through Regenerus Laboratories which is promoted on this site. That came back positive. Proving I do not convert well. You may want to try the DIO2 gene test. If you have a poor conversion disorder it will lead to weight gain if your thyroid isn’t functioning properly. It’s inexpensive and takes about 3 weeks. My only route for a real positive outcome was going private to the most senior endocrinologist in the U.K.

[Zak312 in reply to McPammy]

Hey Mcpammy,

I'm so glad to hear you're doing better. I'd just like to find out something, were you struggling with depressive and anxious symptoms that cleared up once you got treated by your endo?

[McPammy in reply to Zak312]

My symptoms were mainly physical. I was never really depressed or anxious really. I was more upset that I couldn’t seem to get medical help and feeling frustrated. I do know that many thyroid sufferers have depression and anxiety with this disorder. However, since starting T3 medication I feel so much more alive and very happy daily. I’m not sure if it’s because I feel relieved I found my answer or if it has really lifted me out of some low place I was unaware of as I’d been like that for over a decade. I do believe T3 had a big effect for some lifting them out of depression. The only two Drs that can prescribe T3 are Endocrinologists or Psychiatrists. So there must be something in that!

[Bluespots in reply to McPammy]

Thanks for tip on DIO2 gene test, probably one for me too.

[Bluespots]

Not dissimilar story myself over five years or so.....doctors just didn't listen and did not know enough about Thyroid etc auto immune, allergies etc.

[Bluespots]

From my personal experience I would ask about food intolerances causing inflammation and fluid retention. My Endo ignored that issue entirely, but when I got private allergy testing done; I had been poisoning myself for years with what others would call a very healthy diet. My thyroid was up and down, pain everywhere, thought I was getting Dementia. Turned out to be Hashi with lots and lots of food intolerances and allergies. I too had been on a controlled calories and low fat diet and was still gaining weight, which would suddenly drop off in a week or so if I was very poorly ( fluid retention) I had burning skin and swollen knees. Docs have sorted out more

Thyroid meds which has helped massively. After allergy testing, very difficult diet change (sensitive to Sooo many food groups) with anti histamine (also was very short of vitamin D, now supplement, also prebiotic, multivitamin cod over oil and high dose fit see. Stomach and swelling issues stabilising, but still very poorly. Still get anxious and shaky at the drop of a hat....lie down have a rest and then ok.

Get everything tested and don't eat around thyroid meds time, I am sure it aggravated my intolerances. The list of high intolerance is the same as the list of foods I ate after they upped my thyroid meds. Getting better now. Good luck, write it all down, so you don't forget info from appointment.