Hi , I posted here a while back re possible thyroid problems after birth of my last child 11 yrs ago.
Problems are ongoing and feel much worse with drs dismissing me with anxiety.
June 2017 in desperation I paid for bloods thinking maybe just general low vits etc and if thyroid it would help by supplementing with vitamins first.
Results
Ferritin - 15 range 20-150
Vit d. - 10. range. 25-175
Serum folate - 7.55 range 8.83 -60.8
Dr eventually referred me to gynae and gastro re the above results.
Had bloods done in sub clinic of gastro in Sept 2017 Ferritin was 2.
Iron infusion given Oct 2017
Felt much worse , stomach pain , fermenting, fast heart rate with food/drink etc and have been progressively ill since .
Cut out dairy, wheat, gluten, sugar, caffeine, alcohol.
Took manuka honey and slippery elm hoping to resolve stomach issues.
Fast forward to now and I am severely nauseous , eat very limited and small amounts of food , bad headache constantly, feel very weak especially at the core of my body , shaky , frail, dizzy, confused and off balance, bone pain , chest pain, tingling in lower arms and legs, lack of appetite, shivery.
Plus the past few weeks I wake around 6am with a fast heart rate and pounding headache with nausea.
Plus last 2 nights I have been jolted awake at 2 /3am with intense feeling of weakness like i m pinned to the bed , found it incredibly difficult to even get up to drink some water . Very shivery.
So night time is now a nightmare as well as the day.
I am always pottering with something even when my ferritin was 2 but this week I feel completely shut down . No strength or any amount of positive thoughts allow me to do anything .
My gp refuses to look at me as she referred me to gastro which is a wait of at least 2 months. I have tried writing to her to ask her to retest my blood after iron infusion in case another deficiency has been unmasked plus to retest my low d and folate, but she will not.
I have tried supplementing the vit d3 with k2 but I assume I am low in magnesium as I react with pounding heart etc but magnesium alone makes me feel extremely weak and causes a panic attack.
Folate, im afraid to take in case b12 is low as ive researched and found b12 should be corrected first or any damage could be irreversible if you supplement folate first.
Any feedback as to whether those deficiencies are the problem and how I can supplement successfully would be so appreciated please.
I push myself to "live" everyday but recently being so much more ill I feel so scared , confused and alone . I live alone with my 11 yr old child and have no support / family at all. I need to be well to be the mother I want to be.
Thank you in advance xx
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wiiliamsa
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Your symptoms sound similar to those I have been experiencing since July/August. 3 weeks ago, after scans, gastroscopy, numerous blood tests, my gastroenterologist suggested a short synacthin test. It turned out that my Cortisol level was 0 when it should be around 500. I’m now taking hydrocortisone and will be taking it for life. Perhaps you can ask for this test?
Obviously, you have some iron issues and your Vit D is much too low but you know that.
I am sorry to hear you have been ill too. Are you feeling any better, have you been given a timescale of how soon the medication will take to kick in ? Do you take any other supplements etc?
Funnily enough I have just done a saliva cortisol test privately, so I will have to see what that shows. Not sure if that will be as accurate as the test you have had done though. Plus unfortunately when I queried this with my GP before she said that they do not look at cortisol/adrenal fatigue, so i' m not sure what I can do if my cortisol level is off.
Well, tell your GPthat you aren’t talking about adrenal fatigue, you are talk8mg about adrenal insufficiency. Ask her to look at symptoms of Adrenal insufficiency - I had a continuous headache, nausea, loss of appetite, I lost 2 stones in weight in about 8 weeks, severe upper epigastric pain, lower abdominal pain, vomiting, diarrhoea, dizziness, craving salt, the list goes on and on. Not one of my GPs put two and two together - I was literally dieing in front of them. When my SST result come in the following day, the gastroenterologist secretary immediately arranged an appointment with an Endo who saw me the same day. She said “you poor thing, you must be feeling so ill!” At which I burst into tears. I was immediately started on high daily dose of hydrocortisone and within 24 hours I started to improve. It’s still early days, some days aren’t as good as others but I have hope now. Before, I really beLieved that I wasn’t going to get better.
Oh wow that sounds exactly like me ! I feel like im dying in front of them too and I have cried in front of the GP and that's why she s adamant it is anxiety. I am a postitive person but this is buckling me mentally . I am scared for my son as he only has me.
Did you get random pounding heart as well day or at night ?
I feel like something is being injected into me randomly and setting off a myriad of unsettling symptoms.
The upper epigastric pain ..... I was convinced I had an hernia there and no amount of change in diet improves it. I feel better stomach wise if I don't eat but then get the effects of low blood sugar im guessing which is very unpleasant too. xx
I have always had a pounding heart but it does get worse. As I said, take your list of symptoms and print off the list of symptoms for adrenal insufficiency and show them to your GP. I would say to her that if she agrees to the SST and it is negative, then she is right but if it is positive then you will get diagnosed and treated. Even ask a different GP if you think her mind is closed to there being anything wrong. Also, you could point out to her that there is no test for anxiety yet there is a test for adrenal insufficiency. It is rare - my GP says he’s only seen 2 or 3 cases. Adrenal Crisis is terrifying and you can easily slip into a coma and die - the medical profession isn’t up to scratch with this. I will be taking a whole bunch of leaflets into my surgery next week because I want my GP and surgery to know how quickly things can go downhill and I need them to be on the ball.
I guess I just got lucky - he said that as I was hypo he waould get the SSTdone just in case. Thank goodness he did as I was due to have a colonoscopy the following week and I think I would have gone into adrenal crisis with that which would have been awful.
Hi, I can’t really offer any advice as I am currently being investigated for very similar symptoms. The only difference is my thyroid, vitamin and mineral levels are all really good and my gp is taking me seriously which helps.
If it’s any help I went to the endocrinologist yesterday and I have to say they were fantastic. I’ve been booked in for a repeat short synacthen test and long glucose tolerance test before Christmas and had bloods done for lymes, Pheochromocytoma, autoimmune hepatitis and type 1 diabetes as she said all the symptoms fit with these things.
How is your bp, pulse, temp etc? Has your cortisol been tested? A lot of those symptoms could be cortisol related, mine is consistently low so it would be worth you seeing if they will test this.
You definitely need to speak to the gp about Vit D supplements urgently though!
Your GP needs to start you on loading doses of D3. To have a level of 10 (which I presume is 10 nmol/L) is a very severe deficiency.
Vitamin D is actually a hormone and is required by our body for other processes besides healthy bones and teeth.
Your GP needs to follow local guidelines for loading vitamin D as a matter of urgency. Without this your body's "chemistry lab" is not going to work properly and you will go round in circles feeling sicker and sicker.
If you GP wil not do this is there another GP you can see at your surgery? Her washing her hands of you until you see a gastro is somewhat negligent to your wellbeing. Sounds like as if she is out of her depth.
Unfortunately I have the anxiety diagnosis follow me . I have changed surgeries 3 times and this is the 3rd doctor in the "good" surgery .
Im not very pushy and with no support I just live in hope that changing my diet etc will help but that's all that happens is my life is being lived in a box that is becoming smaller and more difficult daily.
I havent had any thyroid tests done as money is an issue and the GP if she will agree will only do tsh and t4 .
Im waiting for private saliva cortisol test result so will see what that throws up.
Also paid for my ferritin, haemoglobin, hba1c etc to see what levels are after iron infusion as I feel worse after it. X
Do you have a friend you can take with you? Can you write down what you think and just give the doctor that and then discuss it with him?
I think a lot of people have had to learn to be pushy however where you have clear evidence of a deficiency such as your vitamin d result you should be treated! Print out the nice guidelines relating to this and take them with you.
Chances are a lot of your “anxiety” will be reduced when you treated properly. I have never had depression or anxiety but I know that feeling so ill has really got me down and without my doctors support I could easily have become another statistic.
When did your Gp last do tsh and ft4? Would they agree to test that again if nothing else? X
Low ferritin , folate, B12 and Vitamin D stop Thyroid hormones working
you will need to start magnesium, then add vitamin D in.
But to tolerate this you may need higher dose of Levothyroxine
When under medicated low stomach acid is extremely common, causes severe pain and acid reflux
Do you have higher Thyroid antibodies? This is Hashimoto's also called autoimmune thyroid disease
Hashimoto's affects the gut and leads to low vitamin levels
Low vitamin levels stop 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 significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
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 money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Thank you for your reply and s ll that info its really kind of you.
I havent had my thyroid checked for a while and so take no meds as GP will not monitor and cant afford to check levels myself . Old test results didnt show much of an issue so thought id supplement with vitamins etc first and hope that would help if my thyroid needed help . Unfortunately I do not tolerate any vitamin / supplement . Foods and drinks trigger fast heart rates .
Ive become scared to try anything now because of these reactions and I never over thought things before these extreme reactions .
Ive tried addressing the gut with cutting out all triggers and taking manuka honey , betaine hcl and slippery elm but I think the stomach issues are a symptom of a deficiency.
Would a low cortisol cause all the over the top reactions my body has to everything internal and external, including noise , tv, being out for maybe an hour. The list is endless
If I do have low cortisol would it be better to improve that before trying to supplement with vit d ? Would I have less of a reaction ?
Magnesium makes me feel like im going to collapse , extremely weak and slow heart rate.
Have just read your post/thread of a year ago. Think we are still waiting for those Thyroid results you had done privately and the vitamins and minerals
What supplements are you taking ? - and how much ? Levo/T4 ? - still a small dose ?
I haven't had my thyroid tested in a while and do not take any meds now as GP will not monitor and levels were not off as such. Psychiatrist prescribed after I asked him . I went to see him in desperation after all drs said I had anxiety. Not helpful really though as im stuck with the psychiatrist on my records now as the only thing they believe. Also I am anxious and depressed at times now but that is only because I continue to deteriorate and am treated badly.
I was hoping to help my health with the vitamins etc but im not tolerating them and just getting worse. Xx
Sounds like your cortisol level is low and so the body will switch over to adrenaline to help push you on. Hence you can get these wired feelings and wake in the night.
You need thyroid and cortisol tested and you know you are low in vitamins. So slowly start to address the vitamins. This isn't going to be a case of fixed over night. You will have many months ahead of you with poor health. The key thing is that you understand a bit more about what is happening and you can take some small steps to improve things.
The immediate thing you can do to help yourself is to pay close attention to what you eat and and how often.
I would be making myself eat something every 2h's. Eat also before you go to sleep. Food will contribute to better cortisol levels to some extent. Protein rich stuff will be useful plus the full fats. So greek yogurt with honey for example.
Also start to monitor your body much more closely and keep a diary. You need to watch your BP, HR and temp each day. Have set points in the day when you do these tests. Over time you will understand the norm for your body. This info will be very useful in helping you work out if something is working for you or against. e.g., if taking thyroid meds and you do an increase, if BP goes up and doesn't come down this is a good indicator you are on too much thyroid replacement. Vitamin D can elevate cortisol in excess and so understanding where your body stats are will help you to work out the right supplement routine.
I am trying to force myself to eat but can only eat limited foods or pain , fermenting , very slow digestion , unable to digest fats and fast heart rate.
Breakfast is gluten free porridge
Lunch and dinner is chicken or turkey with sweet potato.
Supper , gluten free porridge.
I was eating bananas but they seem to unbalance my blood sugar.
I'm waiting for the private saliva cortisol test results but will have to wait to order thyroid unfortunately.
I will monitor my bp, temp etc as you have advised.
Have you got a bp machine at home? Most people have told me they are inaccurate. I will purchase one if you can recommend.
I am not on thyroid medication anymore as GP would not monitor and results were not that off . I thought improving my d3 etc might help if it was struggling but I am unable to tolerate any supplements , so I feel very demoralised .
Magnesium floors me when I try to supplement for the d3 . The d3 gives me uncomfortable fast heart rate .
I use a standard BP monitor. It is irrelevant if the accuracy is not that good. You will still be using the same machine to understand how your body is working day in day out.
So if you get a 140/100 reading one day and you normally get a 125/70 most days you can detect a raise in BP at that time and it may tie in with a new supplement you have taken. Ok, so the accuracy is out by 5 points on each measurement, but this is what you are using and this will provide plenty of good guidance.
I would ask the Ray Peat forum about your diet issues. They have a lot of info on a different style of diet and may help identify specific issues you are having with eating.
Bless you I know exactly how lonely you can feel.... your symptoms are very similar to mine and I have also felt many times of giving up in fact I have tried this year to be positive in getting myself back to some sort of 'normal' but after many GP visits, private Endo, being put on Nature Throid and then NP thyroid neither tablet has made me feel any better in fact I am worse... with help from the forum here and all the lovely ladies advise I have managed to make sure I take B12 vitamin D3&K2, Magnesium, this has helped me so much with balance issues, and feeling dizzy..but I am still plagued with CONSTANT NAUSEA. As soon as I take my thyroid tablet at 07.00am my stomach goes into spasms making terrible noises and I feel awful really terrible my hair is falling out in handfuls my joints ache the list goes on. Today because I have been feeling so poorly I decided not to take my NP Thyroid this morning and do you know what I have felt great nausea gone..did all my housework wrapped crissy presi's I cant tell you how well I feel.
I know that I will have to take the dreaded tablet tonight or I will crash but I know that I will be asking to come of NP and I will have to try something else... whatever that might be ...I will be doing my blue horizon finger test on Monday morning so I will then find out why I have been feeling so poorly for so long... Please don't feel lonely and on your own there are so many wonderful people on here that will help and advise you they are the Salt of the Earth.
Im so sorry that you are struggling to find an answer to full health too, but good that you are finding the vitamins etc beneficial .
Did you ever have trouble taking them , any weird reactions ?
I feel so stuck with my inability to tolerate what I need.
Whether it is too taxing on my system if it is low cortisol being my problem I don't know.
Yes there are so many really knowledgeable and helpful people on here. It really does make a difference to know you re not alone and people have healed and are willing to share and help others too.
I hope you get your answers on Monday with your test . Keep.in touch with your results.
Yes Alison when I first started taking them I took B12 first and within a couple of days my off balance feeling and dizziness (felt like I was on a boat constantly) went. I then waited a week and then introduced D3&K2 which is in a dropper bottle and you take one drop on your tongue. never had any problem or reaction to that. I waited 2 weeks then introduced myself to magnesium and I really think this one has helped my sleep..I used to be awake all night this has gone on for years sleep deprivation is terrible !!! but I lived with it..dont know how but I did. since taking magnesium it has helped my sleep very much, but it maybe a combination of all the vitamins I am now taking, I don't know.. but once I get rid of the nausea I am hoping to start feeling a little better. here's hoping hey! xx
williamsa You are falling into the category of what is being discussed in the post with this link below :
healthunlocked.com/thyroidu...
It seems to me that you are very ill with the symptoms you are describing. I had all your symptoms back in the early 1980s after having my son. However, I was diagnosed with hypothyroid then but received appalling behaviour by GPs, endo's and Profs of Endos.
Very sadly it is still happening.
You say : "Results
Ferritin - 15 range 20-150
Vit d. - 10. range. 25-175
Serum folate - 7.55 range 8.83 -60.8
Dr eventually referred me to gynae and gastro re the above results.
Had bloods done in sub clinic of gastro in Sept 2017 Ferritin was 2.
"
These results should have alerted any GP that you needed immediate action taken with you.
Have you ever had any type of thyroid blood test?
You could very well have adrenal insufficiency, hypothyroidism, or Hashimotos Thyroiditis (which is hypothyroid + thyroid antibodies). You obviously did have low ferritin, vitamin D, serum folate, although if you have been supplementing the results would possibly look different now.
You need a whole series of up to date blood tests to test for TSH, Free T4, Free T3, 2 thyroid antibodies (thyroglobulin & peroxidase), vitamin B12, vitamin D3, ferritin, folate, and preferably cortisol & DHEA.
I have just read that you were prescribed Levo (T4) a year or so ago and had a bad reaction to it. That exact same thing happened to me. I felt worse on the Levo than before I even started to take it, and my TSH was 75. I am guessing now that there is a good chance your body is unable to convert T4 into the usable thyroid hormone T3. That is the reason you must get those blood tests I have listed above. Without them, you cannot know what is happening in your body.
My own profile describes my long and somewhat prolonged recovery due to doctors of every type not comprehending exactly was wrong with me. I truly pray that you do not have to suffer what I did. Also your GP is not good, in fact being extremely unhelpful to you.
You say - "Everyone writes me off as an anxious wreck" That happened in my case too and yes, I was an anxious wreck. After 13 years of suffering at the hands of negligent doctors, I begged to be taken into a psychiatric unit as I felt totally insane. However, I have now found all the answers and hope you can begin your road to recovery very soon.
I am crying reading your message as I feel like I am dying and im so scared. I too feel like I am going insane and referred myself to a psychiatrist 4 years ago who is very supportive but it is not the answer to my problem.
Im sorry to hear you have been fobbed off and mistreated too . Its such a terrible position to be in and it seems there are countless others in the same position.
I am waiting for the saliva cortisol test results I sent off , hopefully will get them this week .
I have booked private tests for ferritin, folate, vit d , b12, tsh , t4 and it includes a few others . I went for the basic test hoping it would throw up something I could look more in depth at. Money is a huge factor for me too but right now I know im nise diving into the wrong direction with my health so I will have to get the money somehow .
I have paced my life over these last 11 yrs , being able to manage and do less and less .
I have been unable to take the vitamins etc my.body goes into panic mode so I fear those levels are now lower.
I assume my ferritin is now higher but I feel much worse and my health is worse after having it . So whether that was too big a strain on my adrenals I dont know .
I had thyroid tests done a long while back but they were ok ish. I think I did post results on here ages ago.
What was your diagnosis and how are you now ?
I have no family or friends to vouch for me so that I get help and feel too weak and ill to even go to the dr now.
How do I get passed the fact they are brushing me off . If I pay private they put in the referral letter do not look at this woman there is nothing wrong with her.
Endocrinologists in my area only deal with diabetes. I researched who was stated as the best a few yrs back , saw him and he laughed at me and said go away you re stressed .
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