Hi everyone - I have just come off a phone call with my doctor with some test results and I feel I am going mad.
I had Medichecks bloods at the end of July
TSH - 5.04 (0.27-4.2)
FREE T3 - 5 (3.1-6.8)
FREE THYROXINE - 16.2 (12-22)
THYROGLOBULIN ANTIBODIES - 552 (0-115)
THYROID PERIOXIDASE ANTIBODIES - 233 (0-34)
With a long list of symptoms (including a lump in my throat feeling that is getting worse) and feeling very unwell for 2 years the results suggested Hashimoto's. I even contacted a private GP (who has Hashimoto's herself) with my results and my symptoms and she confirmed I had Hashimoto's without a doubt.
My GP (who will NOT accept I have Hashimoto's) has just rung me with my latest results following my first face to face appointment (that lasted an hour!! and he was concerned enough to take bloods himself there and then).
TSH - 1.8 (0.35-3.50)
T4 - 13.1 (7.5-21.1)
As several of the other tests have come back abnormal (total white cell count, red blood cell count, haemoglobin estimation and some others) he is sending me to an endocrinologist. Lupus and celiac ruled out.
I don't know why but feel brought to my knees again. How can I have Hashimoto's if my TSH has gone right back down again? I don't wish myself to have Hashimoto's but it was an answer - finally - and that somehow comforted me, as horrible as it was. Now I feel right back at square one. Feel devastated and angry with myself for feeling devastated. I want to fight but I am so tired.
I am still totally convinced this is my thyroid - always have been - and my thyroid is definitely now visibly changing shape on my throat (swollen?) but what on earth is going on?
ANY advice here would be so gratefully received.
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PurpleNel
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Purple nel. That is the way hashimotos works. When the thyroid is attacked it sends out hormones so your TSH should reduce and your ft4 increase. Now TSH is slow to react so if your thyroid stopped pushing out hormones and went back to its low damaged production ft4 woul drop but TSH might not rise as quickly. This might explain your results.
Thank you - I guess that means Hashi's still isn't ruled out then? I am struggling to understand any of these numbers and try as I might can't get the information to penetrate my brain fog.
My GP (who will NOT accept I have Hashimoto's) has just rung me with my latest results following
Has your GP tested antibodies?
Has he seen your antibody results from Medichecks and accepted that they are over range?
GPs don't call it Hashimoto's, they call it autoimmune thyroid disease or autoimmune thyroiditis.
How can I have Hashimoto's if my TSH has gone right back down again?
Since you have known that you have Hashi's, have you started to look into it, research it? Did you read the links I gave you in my reply when I interpreted your Medichecks results here:
Hi Seaside Susie - I started calling it autoimmune thyroid disease as someone on here advised me with the GP and it was him who called it Hashimoto's! Typical hunh?!GP has seen antibody results which is why he wanted to do a whole other range of tests to rule out other autoimmune conditions but he won't accept it is linked to Hashi's.
I have read and read answers, links, articles, medical articles and anything I can to try and understand but I take in so little....or take it in and then get confused....or forget. My brain just isn't working. And I had obviously misunderstood what I had read. I thought the Hashi's swing was a one time thing. I believe I started out hyper 2 years ago (skeleton thin despite eating loads with all symptoms) and then went hypo. I didn't realise it swings back and forth (is that what it does?....arrrrggggghhhhh sorry - I think a one-brain cell idiot has taken over my identity!!)
I would hate you to think you have wasted your time sending me links and advice. I read EVERYTHING I promise (and thank you SO much) but I am just not functioning well. Please don't stop and I apologise in advance if anyone has to keep repeating themselves.
Don't worry, many of us have problems remembering things, my brain certainly wasn't playing ball last week and on Sunday I needed to ask my son something and all I could say was "Have you got the thingies for the wotsits", he is probably used to me now and he knew what I was talking about!
Yes, about Hashi's swings, they're not a one off. They can come and go.
I can't understand your GP, if he knows about Hashi's then he must be able to see that your antibodies confirm it.
Thanks for being patient and understanding. It seems especially cruel that we have to try and figure all of this complicated (to me) stuff when we are at our most ill. My brain fog is 24/7 and seems to be getting worse. I am a freelancer and have tried so hard to keep working but have slowed so badly that I am considering having to claim benefits which I have never done in my life and makes me so sad.
I have Hashimoto’s and I was mismanaged at the start as well. My GP did put put me on 25 µg of levothyroxine but left me on that for six months. My cognitive function went to zilch and I was a zombie sleeping 14 hours a day and still wanting more. You need thyroxine and I found I was only able to absorb information once I started to get medication.
I had bouts of being hypo, getting my meds upped, being able to think and absorb information then gradually drop to hypo again when I needed my next increase (which did not coincide with it being evident in my blood tests). I read and got myself informed during the ‘sweet spots’.
I pushed for increases based on my symptoms and because I was able to demonstrate I’d read round and in at least one instance show I had read more than the GP on the subject (not difficult by the way) I’ve pretty much brow beaten them into getting myself up to 125 µg. I may need another but I’m ok for now.
The whole brain fog thing cannot be beaten by will power alone. Just get thyroxine (oh and consider a new GP?).
Thank you so much for this. It is reassuring and truly helps. I feel so thick not being able to understand hardly any of the information I am given. It is like thinking through layers and payers of fluff. People are so kind and helpful here and I know I am being given valuable information and I feel I am wasting people's time because I can't take it in. I WANT so badly to be inform myself (I always have with anything I have had in the past) but just can't seem to crack this one.
I’m normally high functioning- quick thinking - I have a Doctorate awarded in Biological Science though for my PhD I was straddling bio and enviro. When hypo and at my worst I could barely think to make a cup of tea - no exaggeration- I was suicidal in January this year so frightened was I at the effect of being in this situation (utterly under medicated). I will never forget that feeling of being utterly helpless both physically and cognitively. Very luck to have a hubby who was a rock. I’ll never forget.
Charley-Farley THANK YOU. Reading this......oh what a comfort. Crying as I write this...cry a lot these days. Crying because of.....oh well YOU know!! To read of what you went through....I am a professional and a creative - my brain used to be a little dynamo - and like you even making a cup of tea seems challenging. Seriously questioning the point of it all amid the fear and desperation and to hear you have been there too and emerged at the end....what a comfort.
Crying and depression are all part of it. I was dreadful as my family would testify BUT things have improved with medication and life is worth living again. Hang on in there.
Seem to be some ways from being prescribed anything. Doctor won't accept I have a thyroid issue but has now referred me to an endocrinologist as so many of my blood tests are showing as abnormal (no idea when that might be - been waiting 10 months for ENT appt and am only half way up the queue). Also have a private appointment in October. Maybe one of those will yield something.
You hang on in there - it does get better. I have to say, I’m appalled that your doctor has let this go on so long. The level of ignorance amongst many (but thankfully not all) GPs is shocking. Here’s hoping you get a good endo.
I'm hanging on Charlie-Farley - sometimes it feels like by the tip of my fingernails (not a typo!) but hanging on. And I don't think I would be doing that if I hadn't stumbled across this wonderful group a handful of weeks ago. That makes me feel lucky. Reading the stories on here I get so sad seeing what people are going through needlessly and when there is the expertise and help out there that could change people's lives from desperate to quality. And I want them ALL to be fixed but in the meantime it brings me comfort and much-needed support and advise.
As everyone says Hypothyroidism causes depression when not adequately treated. My GP started me off on 25 µg of levothyroxine (the starting dose for a child) and left me on it for six months until I was on my knees (Did not know what she was doing). During the consultation when she finally upped my Levothyroxine, she offered me antidepressants... I told her I would rather we treated the underlying health condition first before pumping antidepressants into me.
I do think that I detected a slight flushing in the cheeks. I do not hold them in esteem or put them on a pedestal. Respect is earned.
GP general practitioner - clues in the name! LOL! Jack of all trades master of absolutely none. I truly admire the ones who understand this and draw on the expertise of others to run extremely efficient practices, but these are few and far between in reality.
Now many surgeries are in charge of their own budgets, I think they try to avoid referring people to specialists to save money, trying to fudge treatment themselves and way too keen to dish out antidepressants.
I have been on antidepressants in the past and it was wholly appropriate at the time, as I was in the middle of a very stressful time caring for my parents in decline, but it is not a replacement treatment for an under active thyroid. That is what levothyroxine is for.
If, once I am on a full therapeutic dose of Levothyroxine, I were to still suffer with depression I would not hesitate to get help, be it medication or a talking therapy, however, predictably once my Levothyroxine started to be upped the mood lifted and I was happy again 😊👍
It’s the cognitive and physical incapability that makes a hypothyroid person unhappy. It’s really blooming simple.
I look forward to the time when you are sorted and we can share our experiences with another newbie and support them. I have no doubt you will get there. 😊👍
I whole heartedly agree about GP's tend to save money once they are in charge of their own budget. I am convinced he is just in General Practice as a money making business, nothing more than that. It is appalling, but what can be done about it???
Absolutely nothing directly at this stage, but when the evidence bubble of mismanagement finally bursts, I’ll be putting in my two penneth.
The knock on effects to the national economy of having lots of peoples health conditions poorly managed will eventually rear its head in the national financials.
It will appear in people having to be kept on benefits because they are too ill to work and it will affect national productivity figures.
I also think that there will be a bubble of people being diagnosed with hypothyroidism after the Covid thing. For me it seems almost inevitable it will be interesting to see everything play out.
All we can do for now is be aware of the shortcomings, support one another and push back at the absurd notion that an inadequate NHS thyroid blood test is better than listening to how the patient actually feels. 😊👍
I have read over and over again on here re the whole depression thing. Like you, I too went through depression as and of itself many years ago and took the medication that was needed. I have had no re-occurence for 25 years until this. It is extremely comforting to know it is a symptom of my thyroid and that when I eventually get medicated it will disappear.I too look forward to the time when I can stop being the blubbering newbie who just takes and instead help those who come after to believe and find the strength to fight through to a result.
Hi PurpleNel Don’t worry about the blubbering- all part and parcel. It will get better. And think not about where you are now, but where you have been in the past (probably helping lots of people along the way without even thinking about it), then focus on going forward to a recovered you, able to do stuff again. This bit in the middle is where we all support one another as best we can. Consider it as the time when you get a bit of support back 😊👍. We don’t always get to help the people who have helped us, but we get to help another some time later and the good gets passed around. 🤗
Well you are VERY obviously a lovely person - thank you for giving me the time to write this. I drink up every drop of comfort and reassurance right now like there's no tomorrow.
If you need a vent we are all here and you can always pm 😊👍. The folks on here have been wonderful to me- saved my life! I’ll never forget. The help goes round.🤗
I have negotiated and at times brow beaten the GPs in our local surgery to get increases up to 125 µg of levothyroxine. I was put on 25 µg of levothyroxine when I was diagnosed but left on that for six months because my doctor thought it was just a top up dose. 😱
Thanks to all the support and help with people on here, all the good advice and information provided and the support of my brill hubby, I have been ‘tooled up’ to fight my corner and fight I have had to at times. I’m still learning about hypothyroidism and will keep going.
I have experienced a Shocking level of ignorance from some of the GPs and boy how they try and make out they actually know something!?😂.
Pennyannie- I’m lucky as the Levothyroxine seems to be working well and I’ve been able to argue for increases in Levothyroxine whilst still ‘in range’ though experiencing hypo symptoms. I’ve managed to win the argument for recognising symptoms are the most important factor over tests. Metaphorically waving papers and publications at them to highlight their lack of knowledge.
I worked up a spreadsheet with my NHS and blue horizon blood tests in date order and normalised to percentages within range. I expect there is a note against my name now 😬😂
“According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”
“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”
TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.
Presumably you have been improving low vitamin D and low folate since Medichecks test
FOLATE SERUM - normal range 2.8 - 14.5 - mine is 4.5
VIT D - normal range 50 - 200 - mine is 56
Are you now on strictly gluten free diet
Always worth trying strictly gluten free diet with Hashimoto’s
GP blood tests were about 9.30. I mentioned to him when he did it that wouldn't it be best to do it earlier to get a more accurate reading but he told me it would make absolutely no difference. Had no strength to argue.Have been trying to increase VIT D and folate and was more or less on a gluten free diet anyway which I am attempting to turn into totally gluten free.
TSH level is not connected to the antibody level. They are entirely separate. The TSH follows the levels of your Frees: high Frees, low TSH; low Frees, high TSH.
But, also, TSH levels vary throughout the day: highest at midnight, dropping throughout the morning, lowest at around midday, then rising again. So, if you took blood for your Medicheck labs early morning - as recommended on here - and then had an appointment with your doctor to take bloods around midday, the results are obviously going to be different.
The antibody levels fluctuates all the time, but tend to be highest just after an immune attack on the thyroid. During the attack, the dying cells dump their store of hormone into the blood. And, at the same time, a little TPO and Tg also leaks into the blood, where it shouldn't be. So, the antibodies come along in force to clean it up.
Yes - took medichecks sample at about 6am and doctor's at about 9.30. Could the timing really explain such a big difference? Or isn't 5.04 down to 1.8 a big difference?
Hmmm... Tricky one. But I would say that the timing could actually account for the difference, given the fact that the TSH is bound to vary slightly from day to day, anyway. 6 am is very early for a blood sample to be taken, and you can never get the NHS to take it that early for comparison. So, it's all guess work, really. And, I have noticed that the TSH falls sharply after 9 am.
That is very interesting. As I didn't know I was having bloods taken I had had breakfast, cups of coffee (and the shameful morning cigarette). How much was the difference with you?
I've been there, feeling that I was going mad among other things. A nutritional doctor helped me to review my nutrition, vitamins, minerals etc. This was years before anyone mentioned thyroid. You might find it helpful to see a nutritionist to review your vitamins and minerals.
BANT is the British Association for Nutritionists. Web site. bant.org.uk/
go to 'Find a Practitioner' at the top of the page and you can find someone near you.
Get nutrition right and it will help, but it takes time.
Even though you are not coeliac many of us find it helpful to eat gluten free.
Do you take any other medicines or supplements? Sometimes other things interact with thyroid medicines.
Hi Anthea55 - I am not on any thyroid medication. I am quite well up on vitamins and minerals as it formed part of my qualification as a sport professional in my previous life. I have had a healthy diet for many years with no changes and my levels were always good but now it seems I am low on many things. I am assuming that Hashimoto's and what ever other strange things are going on in my body interferes with my body's ability to convert and process vitamins and minerals efficiently.
You definitely have Hashi's - your high antibodies show that.
You should definitely be on thyroid hormone replacement.
Your need for various vitamins and minerals may have changed and it's best to supplement any where your levels are low, but it's not recommended to take multivitamins as they won't give you what you need in the right proportions.
Check for low stomach acid as well as you need stomach acid to absorb vitamins and minerals.
I hope you can get treatment soon. I'm glad that your GP is referring you to someone else, as he obviously doesn't know a thing about thyroid problems.
My symptoms are way better in the summer than in the winter. (Something I’ve put down to vitamin d levels. perhaps this would correlate with your results too?
If you ever get heartburn and think you have high stomach acid it may actually be the other way round and this will be affecting your vitamin levels. GPs automatically diagnose high stomach acid and if anything like my GP will give you omeprazole, a proton pump inhibitor which will actually make things worse. I had this as well at the start, exacerbated by my need for Levothyroxine (it becomes a vicious negative feedback loop).
However, by identifying the combinations of foods that set off an attack and also by going strictly gluten-free as wheat was one of the main protagonists, I have got to the stage where I have not had heartburn for a few months.
Low stomach acid means poor absorption there’s lots of stuff on the site about this and there’s also the list of types of vitamin preparation. Some being more bioavailable than others. It really is just as important what is something is complexed with to make it into a pill. Slow Dragon’s super list goes into this. When hypo I didn’t read too much myself (brain wouldn’t work)- but just took the advice and bought the brands recommended (read round a bit after when I had enough brain power to be interested).
I empathise and have experienced how difficult it can be to deal with health issues while ill - and it can also make one feel very alone and questioning oneself. I know others here will give their best informed advice but I send positive energy that you find the best next step or advice and support - I don't think it is luck as we are generally a proactive bunch - but luck plays a part.
You have got something wonderful to look forward to - getting your brain back! I was employed for my brain and had to give up as I could not remember how to do anything. Once started on the Levo, the little grey cells woke up and started talking to each other. It took a while but every day things began to click into place and I could do things without thinking how to do it! Truly wonderful! I had missed my brain and you will get yours back too. Hug,
What a happy message. Thank you for that image of something so wonderful to look forward to. I can't wait to meet my brain again and the happy, energetic bubbly me that has been absent so long. I miss all of them so much and thinking they are asleep rather than gone forever gives me such hope.
re. the tsh difference this post may interest you healthunlocked.com/thyroidu... do-tsh-levels-naturally-increase-during-menstruation. Could ? be another explanation for the big difference in you GP test.
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